Maxie
A true superhero
Eva
Our everyday superhero
Albie
A little superhero with a big impact
Maxie: A true superhero
Superheroes come in all shapes and sizes. Some wear capes and masks, while others, like six-year-old Maxie, wear their strength and resilience for the world to see. Maxie has faced more challenges in his young life than most people will in a lifetime, yet he continues to teach his family and everyone around him the true meaning of joy, perseverance and love.
"Maxie has given us a healthy dose of perspective. He has helped us to prioritise what is important," his parents share. "He sees the beauty in simple things and teaches us to do that too. He can communicate joy and sadness without talking. He’s quite a social kid—he loves meeting new people and listening to their voices."
A journey of strength
Maxie was born with Dystonic Quadriplegic Cerebral Palsy, Cortical Vision Impairment, Epilepsy, Dysphagia, and Global Developmental Delay. His condition means his family has a deep understanding of both the fragility and adaptability of life.
"Everything is so fragile, but at the same time, the brain can surprise you with what it can do," they explain. Maxie’s journey has connected his family – Mum Annie, Dad Mike and siblings Eliza and Theo – to an incredible network of people, opening conversations and fostering deep connections with others who share their own stories of strength and resilience.
Maxie’s strength is undeniable. He has endured major medical challenges, including seizures and strong medications, and last year, he underwent an Osteotomy Procedure—a massive undertaking for any child, let alone a five-year-old. "We never thought Maxie would be able to take steps in a walker," his parents recall. "But he continues to surprise us."
The power of sibling love
Maxie is not the only superhero in the family. His siblings, Eliza and Theo, embody their own kind of heroism.
"There is no fear or anxiety when it comes to disability for them," their parents say. "They treat everybody as equals and know how to include everyone."
When asked why they think Maxie is a superhero, their answers are filled with love and admiration.
Theo, 8, says, "Maxie can get us into all the good stuff."
Eliza, 11, adds, "Maxie is smiling even on the worst day ever."
A home away from home: Bear Cottage
Through the ups and downs of Maxie’s journey, Bear Cottage has been a sanctuary for the family. "Bear Cottage has been a home away from home," they say. "Our last stay was special—it was Maxie’s 6th birthday, and the whole family celebrated together. Other families joined in too. It’s incredible to be in a space where everyone understands Maxie’s needs."
Whether it’s sitting at the arts and craft table with Judy the Art Therapist, forming friendships with other families, or simply watching Theo run down the hallways laughing, Bear Cottage provides a place of comfort, joy, and understanding.
"The kids love walking down to Manly or Shelley Beach to swim and play. Theo bonded with another sibling as soon as we arrived, and they became BFFs for the whole stay. It’s these moments that make Bear Cottage so special."
Why Superhero Week matters
Maxie’s journey is a testament to resilience, love and the support that Bear Cottage provides to families facing unimaginable challenges. This is why Superhero Week is so important.
"I hope your family never needs palliative or hospice care for your child or grandchild. Mike and I never thought we would. But if you do, Bear Cottage will be there to guide and support your whole family through the diagnosis and the journey afterwards."
"When we were given Maxie’s diagnosis, I remember thinking, ‘I don’t know how to do this.’ My family and friends asked what they could do, and I didn’t know what to tell them because I didn’t know myself. But Bear Cottage knew. Over the last six years, they have helped us navigate our new normal."
Bear Cottage provides essential respite, community, and support for families like Maxie’s. "The Bear Cottage community has given Mike and I the strength to handle tough days. It’s given our children a very special place to connect and make strong friendships with other superhero siblings."
This Superhero Week, we’re asking you to get behind Bear Cottage and support the superheroes among us. Because every child like Maxie deserves a place where they are understood, celebrated and loved.
Get your cape on and be a hero for Bear Cottage.
Meet Eva: Our everyday superhero
Superheroes don’t always wear capes. Sometimes, they come in the form of a 15-year-old girl with a radiant smile, a kind heart and an unstoppable spirit. Meet Eva – a true superhero.
Eva’s superhero qualities go beyond strength and resilience. She has a unique gift for bringing people together, sharing love, and spreading joy. "Eva's superhero qualities include kindness, friendship, and most of all, love. But they don't stop there... she has a way of bringing friends and family together," says her mum, Marian. With her incredible new eye-gazing ability, she’s even become a star in her school’s footy tipping competition—always making sure to pick her dad’s favourite team, the Bunnies!
A journey of strength and courage
Eva’s journey hasn’t been easy. Born without breathing for nearly 20 minutes, she had a challenging start to life. At just three months old, she received a tracheostomy and a PEG to help with her daily care. Diagnosed with Cerebral Palsy and Pseudobulbar Palsy, along with seizures and other medical complexities, Eva has faced many hurdles. But in true superhero fashion, she continues to tackle every challenge with bravery and a smile.
"At the beginning, it was very tough for Eva and all of us to deal with some of her medical conditions," Marian shares. "But as a family, we have learnt to work alongside Eva to make her life more comfortable. We always focus on Eva being special in her own way and try to focus on what she is capable of doing instead of what she isn't able to do."
Superhero siblings with hearts of gold
Eva’s younger siblings, Natalia (11) and Alexander (6), are superheroes too. To them, Eva is simply their sister – someone to love, laugh with, and protect. Their kindness and empathy shine through in the way they care for her and for other children with different abilities.
"They see Eva as their sister and treat her as a normal sibling," says Marian. "We have noticed that both kids are very respectful and kind to other children
with different abilities. They always ask questions and get very worried when Eva is unwell or unsettled. And in return, Eva can't wipe the smile off her face when she hears her siblings arguing in the morning!"
Natalia understands the struggles Eva faces daily and is immensely proud of her resilience. "Being 11 years old now, I can see the struggles that Eva goes through daily, and I am so proud of her as she does her very best to deal with all issues," she shares. "Bear Cottage is amazing for our family. We love coming and staying for a week—it is our home away from home. Everyone that works at Bear Cottage is so helpful and polite. Thank you, Bear Cottage."
Alexander, full of love and admiration, sees his big sister as the bravest person he knows. "I love Eva so much; she is very strong and very brave. Bear Cottage is my favourite place to stay. The food is amazing, and everyone is very helpful. Thank you, Bear Cottage!"
A home away from home – Bear Cottage
For the past 14 years, Bear Cottage has been a sanctuary for Eva and her family. It’s a place where they find rest, support, and a community of love. From the welcoming staff to the delicious meals prepared by the personalised chef, every visit feels like a retreat filled with comfort and joy.
"Bear Cottage has been nothing short of amazing for our family," Marian says. "We started coming when Eva was just six months old, after a referral from the palliative care team. We finally took the chance to go, and from the beginning, the staff were incredibly helpful and supportive."
The kids adore the playrooms, the spa, and making new friends, while the nursing team goes above and beyond to provide exceptional care, treating Eva as one of their own. Located near Manly Beach, it’s the perfect escape—a place where they can focus on making happy memories together.
"We have now stayed at Bear Cottage as a family for more than 14 years and have been blessed to call it our home away from home. The personalised chef always cooks amazing food and caters to all different needs. The kids love the different playrooms, the spa, and most of all, the wonderful friends and families we meet along the way. The nursing staff are simply amazing – they make us feel so comfortable during our stay and treat Eva as one of their own. They are always so friendly and helpful, while also being very professional and accommodating to Eva's needs. Thank you for all your help and support, Bear Cottage."
Why We “Get Our Cape On” for Superhero Week
Superhero Week is about celebrating everyday heroes – kids like Eva who face challenges with courage, and families who walk this journey with love and strength. Supporting Superhero Week means helping children with different abilities and their families experience the incredible care and support that Bear Cottage provides.
"If I had one superpower, it would be flying," Marian says. "So, I could take Eva around the world with us."
Eva and so many other children like her show us what true bravery looks like every day. "It’s an amazing cause," Marian adds. "There are so many kids with different abilities who are everyday superheroes – along with their families and friends."
So, this Superhero Week, let’s all “get our cape on” and support these incredible families. Because real superheroes don’t just exist in comics – they live among us, inspiring us every day.
Albie: A little superhero with a big impact
Albie is a bright, blue-eyed boy with a cheeky smile that lights up any room. His parents, Hannah and David, see him as nothing short of a superhero. "Albie is our superhero because, despite all of the challenges he faces, he is so brave and resilient and tries his best to be happy," says Hannah.
Although Albie is non-verbal, he communicates in his own way, showing courage and joy every day. "He loves to laugh, and the things that make him giggle the most are his big sister Beatrix, being smothered in kisses, and any sort of rough and tumble play!" Some of his favourite activities include being outside in the fresh air, going for walks in his pram, swinging, and splashing in the water. Music is another great love of his. "Albie really enjoys being sung and read to, and on a good day, he even sings along," Hannah shares.
Living with Lissencephaly
Albie’s life is shaped by a complex condition—Lissencephaly, a rare neurological disorder that means he has a “smooth brain.” The diagnosis was caused when Hannah unknowingly contracted the CMV virus during pregnancy and was unaware of what a catastrophic effect it could have when contracted for the first time, in the first trimester of pregnancy.
“Lissencephaly affects every individual differently,” explains Hannah. “Albie is hearing and vision impaired, experiences global developmental delay, four-limb dystonia, and cerebral palsy. Developmentally, he is similar to a three-month-old—he can’t roll over, sit up, crawl, eat, or communicate verbally.”
The hardest part, however, is managing his symptoms. “His distress and muscle spasms make everyday tasks a challenge. He needs to be held almost constantly as he struggles to sit or lie unassisted. Our world has been turned upside down by Albie’s diagnosis. I don’t think anyone can ever be prepared for having a child with complex medical needs.”
Many people tell them, "I don’t know how you do it," but as Hannah puts it, “Of course, we don’t have a choice. But no one knows their superhero powers until they are put to the test.”
Strength in the face of adversity
Despite everything, Albie’s resilience shines through. “We see his strength every day in his ability to smile, even in the most challenging situations.” Albie has been admitted to hospital more times than they can count, but even in those difficult moments, he lights up when nurses come in to see him or when doctors do their rounds. “He finds joy in the simple things – being in nature, cuddles from his family, bath time, singing, and music.”
Albie is also incredibly determined. “He’s always willing to try new things,” Hannah says. “We witness his strength every day when we see how motivated he is to engage in his physiotherapy, occupational therapy, and speech therapy. He gives everything a go.”
Their little boy has also changed their family in ways they never imagined. “Albie has taught us to be brave because every day he is braver than he should have to be. And while we desperately wish life wasn’t so hard for him, we’re in this together. We can do hard things.”
Beatrix: the unsung superhero
Albie isn’t the only superhero in the family. His big sister Beatrix has a special kind of strength too. “She is the true definition of a superhero sibling,” says Hannah. From the moment they brought Albie home, Beatrix adored him.
"Obviously, he has extremely high care needs—he requires medication every four hours, day and night, and unfortunately, he cries a lot, which takes our attention away from Beatrix. “But she is always kind and loving toward him. Every morning she greets him with a kiss and a ‘Good morning, bubba.’”
Beatrix loves helping with Albie’s care, whether it’s choosing the fabric cover for his button, flushing his tube, or pressing buttons on his pump. But beyond that, she has developed an incredible sense of inclusivity. "One of her biggest superhero powers is how she takes everyone’s differences in her stride,” Hannah says proudly. “She has no filter when it comes to interacting with kids with additional needs—she is so accepting. We can learn a lot from how young children embrace others without hesitation.”
The lifeline of Bear Cottage
For Albie and his family, Bear Cottage has been a place of refuge and support. "The staff at Bear Cottage are angels on earth, and our family would be lost without their support," says Hannah. Initially, they were hesitant about going. "Albie was only two months old at the time, and to be honest, we didn’t want to go there. But we are so glad that we did."
Unlike what many assume, Bear Cottage isn’t a sad place. "Their motto, ‘Life is for living,’ encapsulates the spirit of Bear Cottage so well. It’s a community unlike any other, where deep pain and overwhelming joy can coexist—sometimes in the same day."
One of the biggest gifts Bear Cottage provides is time. "It gives us breathing space—to just be Albie’s parents instead of his carers,” Hannah explains. "The nurses handle all of the medical aspects, so we don’t have to prepare feeds, administer medications, or wash syringes. We can just be mum and dad."
For Hannah, one of the greatest joys of staying at Bear Cottage is something many take for granted: "Letting the nurses care for Albie overnight and getting a good night’s sleep!" Being so close to the beach is another highlight. "It’s cathartic to be able to have a dip in the ocean."
Beatrix, too, adores Bear Cottage. "She LOVES it. The staff make her feel so special when we’re there." Thanks to Bear Cottage supporters, their family has enjoyed unforgettable experiences, from trips to Taronga Zoo and Sea Life Aquarium to tickets for Bluey’s Big Play.
Even when they’re not staying there, Bear Cottage remains a source of comfort. "It’s reassuring to know they are there if we need them. Now that they know Albie, we can call the nurses for advice at any time, day or night," says Hannah. "I’ve called more than once at strange hours, saying, ‘I hope it’s OK to ring—I didn’t know who else to call.’”
Why Superhero Week matters
Bear Cottage is the only children’s hospice in NSW, and families like Albie’s know just how vital its work is. "It’s a place you wish you never had to know existed," says Hannah, "but when you need it, you are so glad that it does."
During Superhero Week, the family asks people to take a moment to imagine what it would be like if their child—or a child they knew—was diagnosed with a life-limiting illness. "Any donation, big or small, is a way to show families like ours that you see us, that you care," says Hannah.
But support isn’t just financial. "If you can’t contribute money, please share the fundraiser on social media, at your local sports club or workplace. Or consider volunteering your time to become a Bear Cottage volunteer."
Superhero Week is about recognising the strength of children like Albie and families like theirs. And, as Hannah so powerfully puts it: "No one knows their superhero powers until they are put to the test."
In Loving Memory.
More superhero stories
The Power of Positivity
Superhero Kira - can make others happy with her infectious smiles and giggles
When Ben and Lee became first time parents, they never expected to need Bear Cottage. Now they couldn't imagine life without it.
Ben and Lee's twins, Kira and Mia, were separated just two days after birth. Kira then spent the next few months under the care of the Grace Centre for Neonatal Intensive Care at The Children’s Hospital at Westmead (CHW).
Kira, now nine years old, was diagnosed with KCNQ2 Encephalopathy, a rare form of epilepsy that typically presents in the first week of life. She is one of less than 1000 children who have the condition worldwide.
“When Kira was in the Grace Centre, Lee and I had to divide and conquer. There was always one of us in the hospital and the other at home with Mia. As we were first time parents, just having kids at all was a challenge,” said Ben, Kira’s dad.
“Once we had a diagnosis at nine months, we began to try to implement a routine to our lives.”
With KCNQ2 Encephalopathy comes global development delay, which is when children are significantly delayed in their cognitive and physical development. As Kira has severe delays; she will be like a nine-month-old for life. Kira also has further complications and between all the medical appointments, finding the right balance was difficult for the family.
“Family time is pretty limited, even with carer support,” Ben said.
Bear Cottage now plays an important role in their family life.
Kira had her first stay at Bear Cottage in 2019 and has since been a regular visitor. A happy and positive girl, her superpower lies in her infectious smiles and giggles, which have the remarkable ability to spread happiness to all around her.
Ben said the help of Bear Cottage has improved the mental health of the family and allowed Mia to just be a kid too. Knowing that they can enjoy time together as a family at Bear Cottage or feel comfortable taking time out for a holiday with Kira safe in the care of its wonderful team, has brought the family closer together.
“The amazing team of trained professionals are so well organised, and we always feel we can let go knowing that Kira is in good hands. They are all lovely people who genuinely care about their patients and families, and that is true whether it’s the nurses, housekeeping staff, the chefs, or the management team. They all know Kira so well!” Ben said.
“Kira’s sister Mia also really likes Bear Cottage and there is always plenty to do for her as well. From the craft tables and games room, to making friends with other siblings of kids staying onsite, Mia always likes to visit”. Mia embodies the essence of a superhero sister, exuding empathy and
boundless energy, as she endeavours to involve Kira in every aspect of their shared experiences. She is a beacon of support and camaraderie for Kira and together, they form an unstoppable duo.
“Another benefit has been getting to know some of the other parents who stay at Bear Cottage, there is a real sense of community. Just knowing that you are not alone certainly helps and no matter who you talk to, there is always respect.
“Bear Cottage has changed our lives, and we can’t thank them enough for all that they do for us!”
Kira’s family ask that you ‘get your cape on’ this Superhero Week to show support to Bear Cottage and the families they support. As Ben said “Dress up events can make people nervous until they arrive in costume and realise that they wouldn’t have had as much fun if they hadn’t got into the spirit of it all. You may feel a little silly but most actually see it as a sign of courage”.
A real trooper!
Superhero Emmanuel – has the determination to persevere through adversity
Emmanuel is a bright and bubbly young man. His smile lights up a room when he enters, and everyone falls in love as soon as they see him. He loves being tickled, to listen to music, dance with his siblings, and happily observe the world around him. Best of all, he loves cuddles!
The challenges that he has faced from the start of his life and his strength to overcome all the medical obstacles that have been thrown his way, make him a little fighter and superhero. Mum says, “Without superpowers, he would not be able to deal with the daily demands of a medically complex life”.
His most remarkable superhero attribute lies in his ability to find solace in watching one of his many favourite videos, even amidst painful medical tests, or when he is in general pain. Just by watching what he loves, he can take his mind off the pain, and even laugh......what a trooper! A testament to his incredible resilience.
Emmanuel was born with neonatal onset Ornathine Transcarbamylase Deficiency (OTC). The family did not know of his condition until he seemed unwell a day after he was born. After being rushed back to ED, and hours of testing, it took weeks to confirm his diagnosis of OTC.
As time has gone on, and they have adapted to the needs of Emmanuel, they have learned as a family that living day by day is the best way to live and cherish every day that they all have together as a family. Life can be very tough sometimes, but they focus on making their days together the best they can be.
“At first, I was very sceptical about what Bear Cottage could provide for us. I was scared to leave my son in the hands of others while I got rest. I even felt guilty about it. But once we 'bit the bullet' so to speak and walked through the doors of the cottage, I felt immediately at ease”, said Teresa, Emmanuel’s mum.
“I love the smiles we get as soon as we go through the doors - we feel part of a much-loved extended family”.
Emmanuel is the youngest of five children and his initial illness put a massive strain on the family. His siblings were thrown into confusion about what was happening with their brother and Teresa and Louie, were just overwhelmed with the unknown future of their baby. Emmanuel's siblings have learned to be more patient and have more love for their fellow neighbour. It has taught them the value of life's preciousness, demonstrating that through our everyday actions, such as sharing love, kindness, and a smile, we can profoundly impact the lives of others.
“Bear cottage has given us what we could not get anywhere else. The love and care they show Emmanuel and our whole family is beyond compare and absolutely priceless. Without their help and support, we would not get the much need break that our minds and bodies require when you are faced with the daily challenges of living with a medically complex child.”
Emmanuel’s family believe Superhero Week is “a time to celebrate our young children, who are going through so much and give them a chance to show the world who they truly are, Superheroes!”
Superhero Ben – with a gorgeous smile that lights up any room
Ben is a charming eight-year-old boy with a huge grin and a lovely laugh. When Ben was born, an unexpected brain injury resulted in severe quadriplegic cerebral palsy. A few weeks later, Ben was discharged from the hospital and the enormity of caring for a terribly unwell child overwhelmed Peter and Vita. So, they came to Bear Cottage and ended up staying for about three months. “Everyone at Bear Cottage was kind and calm, not bothered by feeding tubes, medicine or a very unsettled Ben…it was such a relief.” And the rest is history.
Ben and his family have been coming to Bear Cottage once or twice a year for respite for eight years – and they love it! One of Ben’s favourite things is the large bath and the music therapy sessions. For Mum Vita, “A stay at Bear Cottage means a change of scene, fresh sea air, chef cooked meals, relaxed family time and no housework. It means time and space to rest and recharge”. Ben’s adoring sisters love that the family have a chance to hit pause for a short while. They can enjoy spending time together doing arts and crafts, reading their favourite stories, or taking a stroll down to Fairy Bower Beach. (Not to mention, there are Coco Pops in the kitchen and ice blocks in the freezer!).
In true superhero style, nothing stops Ben enjoying life – whether he’s giggling with his two sisters, Ruby and Sophie, working out with his physio, going to school or listening to birds – his good humour will have you joining in, in no time. Ben is “a champion of resilience, he has an amazing ability to bounce back from any situation – his gorgeous smile and pure heart lights up any room”.
Peter and Vita believe the support for the family comes from not only the Bear Cottage staff but from meeting other children and amazing families in similar circumstances who ‘get it’, which Vita says “has led to friendship and mutual support".
For Ben’s family, Bear Cottage plays an important role in their family life – and they have seen how it can play a big part in whether parents cope or fall apart. “Bear Cottage provides the support for families to gather the strength to keep facing the unbearable”. And that’s why they are asking you to support Bear Cottage this Superhero Week, to help raise vital funds so Bear Cottage can continue to be there for superheroes like Ben when they need it most.
“Portia will do incredible things one day and I cannot wait to stand by her side and watch her conquer the world – she’s my very own Superhero”.
Superhero Portia is 20 months old and a very happy little girl who loves the Wiggles, music and shaking her rattle. At the end of May 2022, just 4 days before her 1st Birthday, Portia went into cardiac arrest and spent time in a coma and on life support and has since been diagnosed with a brain injury, Cerebral Palsy and her sight has been affected. As the weeks go on, Portia is improving and is the most courageous and fun little girl – with her own cheeky little personality developing more each day.
There’s always a smile on Portia’s beautiful face and mum Megan, says “It’s going to be a different journey from what we had thought but now I can’t imagine it any other way. Portia will do incredible things one day and I cannot wait to stand by her side and watch her conquer the world – she’s my very own superhero”.
Portia and Megan first came to Bear Cottage in September 2022 as a step down to home after being discharged from the hospital and truly believes it prepared them for life at home with Portia. Megan was very unsure and nervous at first bringing Portia home from the hospital, but after spending a week at Bear Cottage with the nurses and staff supporting them, she felt so much more confident. Megan was also thankful that Paige, Portia’s seven-year-old sister, was able to stay with them at Bear Cottage and got to understand what it was like to have a sister with high needs.
For Portia’s family, staying at Bear Cottage “gives us time to be a family and enjoy time together, to create new memories as a family with Portia, giving us a break from our busy daily life. Having the caring and supportive Bear Cottage nurses and staff makes us feel like we’re at home, everyone shows so much love and warmth. Bear Cottage is our happy place”.
Whilst at Bear Cottage, Portia enjoys music and singing songs with the Music Therapist, Belle, getting lots of cuddles from the nurses and have a story read to her by one of the volunteers.
Not only is there amazing support for Portia, but Paige, also loves staying at Bear Cottage where she spends hours playing with therapy dogs Henry and Beau, doing craft with the Child Life Therapist, Polly, hanging out in the sensory room and going for a swim at the beach. Megan’s favourite part of their stay “is when everyone sits around and enjoys a meal together, it’s like one big family”.
“Bear Cottage is an amazing place and brings so much joy to so many children and families. Having the support of Bear Cottage gives parents and families a home away from home and a place to have a much needed rest and break” and Portia’s family would like you to get your cape on and help raise funds to ensure Bear Cottage can support all our Superheroes.
Every day, without warning, people can be forced to show superhero strength they never knew they had. That’s exactly what Angelina and her family did two years ago after her shock diagnosis.
Angelina is 16-years-old and lives with Lafora disease; a sadly incurable disorder that affects the whole body but mainly the brain. The very rare condition comes with what is commonly called childhood dementia. Angelina has symptoms like confusion, behavioural and speech difficulties.
Only a few years ago, before her diagnosis. Angelina was a typical, bubbly, high school student who loved hanging with her friends. But today she can no longer go to school, read, write or even hold a pen.
In such a short time, Angelina has gone from being a high-achieving student who loved drama class to being completely dependent on her family. From feeding, to bathing and dressing, she needs around-the-clock care and must be monitored constantly.
It’s so tough for Angelina to adjust to the huge changes Lafora disease continues to bring. Just leaving the house takes enormous effort and care. Once-easy decisions, like what to wear, have been suddenly replaced with major struggles like trying to avoid the unpredictable bright lights in public spaces that can cause her to have seizures.
Watching Angelina deteriorate is devastating for her mum Niki and the entire family, including Angelina’s older sister and three step siblings. For now she is still walking and talking and determined to make each moment count, for which they are thankful, but at some point, they know she will become bedridden.
Through it all though, Angelina’s sparkling personality and determination shine bright. Even in the toughest moments, as they struggle to cope, Angelina’s family are amazed by her superhero strength – as well as their own.
“Life is extremely challenging,” says Niki. “The whole family is on high alert all day every day. But Angelina is still very ambitious and independent, and she wants to do everything herself. She is determined to fight, which is a good thing.”
However, the truth is, even superheroes need support and when Angelina’s family needed this the most, Bear Cottage was there - thanks to the generosity of supporters like you.
Bear Cottage is somewhere the whole family can escape to for much-needed respite. It has become their home away from home – a unique place to relax, make memories and connect with other families, all while meeting the complex needs of Angelina’s life-limiting condition.
“Angelina loves the nurses, the deep bubble bath, watching movies and the whole social engagement and interaction that take her away from the confines of home life,” says Niki.
“It’s like a holiday for her and she never wants to leave.”
The break from intense caring responsibilities is something Niki and the family also appreciate deeply.
“The nurses help so much that I get to have a good rest from feeding, bathing and dressing her,” says Niki.
“Other perks are not having to cook or clean too – so you really get to revive to keep going as daily life doesn’t stop.”
Bear Cottage has never been more vital for families like Angelina’s. With the future so uncertain for the teenager and others like her, Angelina’s mum encourages everyone to support Superhero Week this July. By doing so, you will ensure every family who needs it can know the immense relief that comes from visiting Bear Cottage.
“Bear Cottage is a place where Angelina can forget that she is sick and feel normal for just a little bit.”
Superboy Kobi has a smile and inner strength that lifts his mum, Ella’s spirits on the toughest of days. The mother of two is grateful a place exists where her family can go to relax and recharge – to keep that beautiful bond with Kobi thriving.
Ella’s pregnancy with Kobi was perfect - her sonograms showed he was measuring well and everything was on track. In the months leading up to his birth, she even read nursery rhymes and bedtime stories to help Kobi recognise her voice.
Shortly after Kobi was born, he turned blue and the life she hoped for her newborn baby boy started to feel more and more out of reach. Kobi spent the first year of his life at The Children’s Hospital at Westmead, where he was treated for feeding difficulties, breathing problems and then cardiac arrests.
Instead of playgroups, their family attended appointments and instead of holidays there were hospital stays.
Despite countless tests and genetic sequencing, to this day, Kobi’s condition remains a mystery. Now 12 years old, he can’t speak, swallow, eat, sit, stand or walk and breathes with the help of a tube inserted into his neck called a tracheostomy.
Due to his high medical needs, Kobi will need intense support for the rest of his life.
Kobi has every reason to be frustrated. Yet despite his huge challenges, he lives with a calm, joyful and gentle spirit. “Kobi is a superhero,” says Ella. “Despite all his limitations he is the most beautiful boy, he is strong, and he is happy. He can make you feel pure love.”
Ella admits Kobi’s round-the-clock needs can leave the family, including Kobi’s dad Grant, and sister Harper, isolated and burnt out. Life is filled with extended hospital stays, therapy and medical equipment. As Kobi’s condition is unknown, there is no support group to connect with others like them. “It has been very hard to find a place to fit in,” says Ella.
But when Kobi was three, all that changed. His family was invited to stay at Bear Cottage, the only children’s hospice in NSW. At first, Ella was sceptical. “I thought it would be a sombre place,” she says. “…but how wrong was I!”
On their first visit, Ella quickly realised Bear Cottage was a place they could all feel right at home. The staff and other families truly understood the emotional and physical impact of caring for Kobi. That felt amazing. It was a place they could come to live.
On their regular Bear Cottage stays, Kobi enjoys activities with the other children, like craft, singing and the sensory room. He loves visiting the Manly beach pool and floating in the water. The focus is always on building his strengths – not on his limitations. “At Bear Cottage, the team treat Kobi as the amazing little dude he is,” says Ella.
His five-year-old sister, Harper really enjoys the Christmas parties, with activities for everyone, yummy food and of course Santa. She looks forward to meeting other siblings and to relaxing with Kobi, away from their usual routines of home.
For Ella, it’s the chance to take a break from the medical aspects of caring for Kobi. “We can relax and have time to be just mum, dad and sister to him,” she says.
“The opportunity to connect with other mothers at Bear Cottage’s bootcamps are so special. I still remember my first trip - it was the first time I felt like an ordinary mum, surrounded by strong women going through unique but similar journeys and I’ve made lifelong friends,” recalls Ella.
As this year’s proud Superhero Week Ambassador’s, Ella wants you to know how important Bear Cottage is: a place of love and fun, where parents like her can celebrate their superhero children with life-limiting conditions. “When you support Bear Cottage, you are giving kids like Kobi the chance to experience new things and allowing us to re-energise, so we can continue to be the best carers possible.”
The incredible support of Bear Cottage is only possible thanks to the generosity of people like you. Get your cape on and join us this Superhero Week from 23-29 July 2022 to help more families like Kobi’s access our respite and care.
Bravery, courage and love – three traits all superheroes possess, and three words that define Cameron’s family.
Cameron was just six months old when his parents, Rachel and Matthew realized he wasn’t developing like other babies his age. In the blink of an eye, their normal world morphed into a world full of hospitals, doctors, waiting rooms and MRIs to try to find out what was wrong with their baby boy.
After a year of tests, doctors confirmed the news Rachel and Matthew had been fearing – Cameron had cerebral palsy, scoliosis and epilepsy. The diagnosis meant that Cameron could suffer multiple seizures a day, would need to be fed through a tube and would rely on medication and around the clock care for the rest of his life.
The journey that followed was tough but in true superhero form, Cameron and his family faced it head on, approaching each day with immeasurable strength and courage.
Knowing that no battle is fought alone, Cameron’s family turned to Bear Cottage.
“Bear Cottage was there for us when we needed it most. It has become our second home and somewhere our family can go to regroup and re-energise,” Rachel said.
Bear Cottage offers a place for Cameron’s family to enjoy being just that – a family. With the comfort of knowing Cameron is receiving the best medical care, they can take the time to relax and enjoy some of life’s simpler pleasures, like going on excursions, enjoying Art and Music Therapy, visiting the beach and so much more.
“Bear Cottage isn't a sad place; it is a beautiful place that brings joy and hope to so many families like mine. The memories that we have been able to make there are priceless,” Rachel said. For sisters, Chelsea (11) and Tayla (7), Bear Cottage also gives them the opportunity to attend Sibling Camps where they can meet other kids who can relate to what they are going through.
Despite everything they have been through, Cameron and his family still approach each day with bravery, courage and love.
“Cameron is my superhero because he lives every day to the fullest. He has the ability to put a smile on everyone's face,” Rachel said.
“My girls are incredible too with what they do for Cameron. Not only do they take beautiful care of their brother, but they also encourage their school and friends to get involved in Superhero Week to help support him and kids like him,”
Help us support incredible families like Cameron’s by taking part in Superhero Week.
Even before she was born, super girl Isla was overcoming huge challenges just to survive.
Isla was born with Edwards Syndrome (trisomy 18), a genetic condition, resulting in severe disability. Caused by an extra chromosome 18, babies with the disorder also have life-threatening medical conditions, like breathing and heart problems.
Isla’s parents Nadine and Steve received her devastating diagnosis at just 12 weeks gestation. “We were told the average lifespan for infants that survive to birth is three days to two weeks,” recalls Nadine. “Of those, only 5% to 10% survive past their first birthday.”
It was during this extremely uncertain, sad and overwhelming time that Nadine and Steve were referred to Bear Cottage: it proved to be a lifeline and was exactly what was needed.
“A child’s imminent death is phenomenally challenging,” says Steve. “Trying to hold all the uncertainty in our heads was exhausting. But from the start, the Bear Cottage team cut through the doom and gloom to focus on our needs; both if things went well and if they did not.”
Against the odds, super girl Isla survived the critical first weeks. She has continued to surprise everyone with her strong spirit and will soon celebrate her third birthday – a remarkable milestone. This cheeky, smiley little girl just loves people watching, being outdoors – and especially being with her big brothers Isaac and William!
But the fact is, Isla faces huge health and physical challenges every day and requires constant care from her family. She has severe intellectual and developmental impairments and will need 24/7 care for life. Therapy sessions, tests and doctor appointments are a daily reality.
While Isla is happily unaware of her condition, life will never be the same for her family as they face day-after-day worrying about Isla’s health. Going without the local support of extended family, who are back in the UK, along with the impact of the COVID-19 pandemic, have added extra layers of worry.
“It’s been difficult,” says Nadine. “Isla’s lifespan is uncertain but likely to be short, so our focus is on her quality of life.”
Nadine is just grateful that Bear Cottage has been there for the whole family since the very start. Whether it’s a respite visit or a stay after one of Isla’s surgeries, it brings indescribable relief to hand over responsibility for Isla’s complex care to the team, after months providing 24/7 support to her, while also trying to give Isaac and William a normal childhood.
At Bear Cottage, Steve and Nadine know there is always someone to chat to who understands. Isaac and William look forward to making keepsakes with the art therapist and using the spa and games room. Steve enjoys walks on the Manly coastline. “Having some time with my own thoughts in a beautiful seaside environment is very precious,” he says.
Nadine explains: “We usually take the boys to the cinema, visit the ocean pool and eat fish and chips at Manly. Getting to focus on Isaac and William is a fantastic aspect of the stay. And when we get back to Bear Cottage after a day out with the boys, we find Isla has had a day packed with activities with the therapists, volunteers and nurses.”
Because of Bear Cottage, Isla’s family has the support they need to embrace each day, despite facing an uncertain future. Nadine and Steve encourage everyone to support Superhero Week this July, to help raise vital funds for critical support they and others couldn’t live without.
“Our normal is almost unimaginable for most people,” says Nadine. “But the Bear Cottage team is amazing and so crucial: they make the impossible seem possible and help us see a way through.”
"The kids at Bear Cottage, their families and carers are all superheroes."
“Thank you for getting on board this Superhero Week and supporting families like ours – our stays at Bear Cottage are always a highlight.”
Dynamic duo - Jen and Alexander
Jen and beautiful little Alexander are two of our very special Bear Cottage Superheroes.
Two-and-a-half-year-old Alexander was born with a number of significant complications and had many months in hospital before he was able to come home. With brain, heart and respiratory issues, he requires around the clock care and whilst Jen has some support, being his primary caregiver meant sleepless nights and the weight of all parental responsibilities and high-level medical care resting on her shoulders.
As a parent raising a child with chronic medical needs without a partner, life is not easy, but in October 2016 Jen was pushed to a new limit. Diagnosed with cancer, she wondered what her pending surgery and extensive treatment and recovery time would mean for the care of Alexander.
That’s when she first connected with Bear Cottage, and they have continued to visit for regular respite ever since. “I knew from reputation that we would be greeted with a warm smile and hug and accepted unconditionally. I wasn’t prepared for the instantly calming atmosphere, the homely feel, well-stocked bookshelves, hand-made quilts on each bed and the gracious volunteer playing the Cottage’s grand piano and inviting children to gather around and enjoy the music.
As a mother I was overjoyed and inspired to see my son encouraged to interact in art therapy and music classes, where he is assisted to paint his own handprint or listen and explore a range of musical instruments. He is cared for like someone’s only child and not ‘just’ a patient. Our visits to Bear Cottage allow me to be the best mum I can possibly be and to maintain equilibrium in my life. I am unable to change my palliative child’s chronic and complex condition – that much I know and accept. But as Alexander’s mother, I can now just focus my time and energy on making his fraught and unpredictable life as comfortable as it can possibly be. I feel very fortunate that Bear Cottage is able to understand Alexander’s complicated medical needs and provide so much care for us both.”
Your support during Superhero Week helps us continue to provide this vital support to special superheroes like Jen and Alexander. Thank you!
Family ties - Belinda, Bear Cottage mum
Asking for and accepting help has never been something we’ve been comfortable with.
When our daughter, Erin (now 10) was born we knew eventually we’d need a bit of help. Erin suffered a fetal-maternal transfusion within the final hours of pregnancy, this means that most of her blood drained out of her body before birth.
Erin had a number of blood transfusions at birth, but her brain was badly damaged as a result. Erin has cerebral palsy and we were told that with the amount of damage to her brain, it would be unlikely if Erin survived past her first birthday.
We first heard about Bear Cottage in the early days of Erin’s life. Unfortunately, our stubbornness prevented us from visiting or having any contact.
When Erin was 7 years old, her airways started collapsing and we were again given the heartbreaking diagnosis that Erin’s condition would more than likely be fatal. After spending a long, hard and emotional 7 months locked up inside our house, to keep Erin at a stable air temperature we were at breaking point. We needed to open up and allow someone else to help us to care for Erin and to allow us the opportunity to have a break and spend some much-needed time with our son Denver (now 12).
I arranged for Erin, Denver and myself to spend a week at Bear Cottage and for my husband Darin to join us at the weekend. I didn’t really know what to expect. I was amazed at how relaxed, comfortable and welcome we felt.
Denver enjoyed meeting other siblings, being involved with the music therapy, visiting the beach and spending quality time together. He was made to feel very welcome by all of the staff and volunteers and loved the attention he was receiving from everyone.
After the first few days, my husband asked me “Does it really feel like a break?” Yes it really did, so much more than expected. I was able to sleep in, go for walks, relax, do yoga and enjoy the good parts with Erin like cuddling and not having to worry about the day-to-day care of feeding, bathing etc. Darin joined us on the weekend and was able to relax and see for himself what I’d been telling him all week. At the end of our first week, honestly we didn’t want to leave.
In the years following, we have been able to visit Bear Cottage as a family numerous times. I’ve attended a mum’s camp where I was pampered, spoilt but most importantly I was able to meet some amazing mums and connect with them in a relaxed and fun way.
Denver has really embraced being a part of the Bear Cottage family. He has attended sibling camps where he was able to meet and bond with other siblings who ‘just get it’.
Denver was inspired to approach his school and nominate Bear Cottage to raise awareness and funds. With the help of his teachers and the school community, the school held a Superhero Day where all the teachers and students dressed up as superheroes, had a teddy bears picnic and held a raffle. Denver even contacted Arnott’s Biscuits to see if they could donate Tiny Teddy Biscuits for the students to enjoy as part of their day. He was beyond excited when they agreed. The day went well and the school was able to raise almost $2,000 to present to Bear Cottage.
Denver loved telling his friends and fellow students about Bear Cottage, what it is and why it is such an important place for families. As parents, we are so proud and happy that he has been able to fulfil his dream to give a little back to this place that has made him feel like he was a part of it.
Bear Cottage is an amazing place for families like ours. We’ve met many great people that we’ve been able to bond with, share stories and experiences with on our own terms knowing that we have all been through so much and all understand the feelings that we have experienced with our childrens' diagnoses.
Bear Cottage is not only caring and beneficial for the sick child, it is special to the entire family, and I can now see how important that is for all of us.
Wonder boy - Moustafa
The word “superheroes” can sometimes be overused but when it comes to describing Moustafa and his family, you couldn’t find a more perfect description.
Moustafa is 10 years old and lives with a rare disorder known as VACTERL syndrome. The complex disorder affects multiple parts of his body including his heart, vertebrae, kidneys and limbs and has meant that Moustafa is unable to walk, talk, eat or even breathe on his own or without aid – in other words, Moustafa is completely dependent on mum and dad.
Moustafa’s life is dictated by his medical needs. Everything from eating, playing, sleeping and bathing right through to medication and social interactions require a relentless routine that must be overseen by his mum and dad 24/7. This is in addition to the constant medical appointments and hospital admissions. Just leaving the house requires a superhuman effort.
As Moustafa gets older this complex regime only becomes more complicated and the responsibility of caring for him gets bigger and bigger. But despite the devastating impact of Moustafa’s condition, his incredible family take every challenge in their stride.
“Caring for Moustafa has taken a huge toll on everyone, we have had to adjust our entire life to ensure the family stays afloat” says Dad Mahmoud.
“But for everything we have to go through, we know Moustafa goes through so much more. Despite all his hardships, he is still able to smile and shows so much willpower and determination. That’s what keeps us going . . . in our eyes Moustafa is a real super hero”
Knowing that no battle should be fought alone, Moustafa’s family turned to Bear Cottage last year – a place they described as “paradise on earth”.
“Upon our first stay we were blown away; the best way I can describe it is as a five-star hotel that is run by doctors and nurses,” says Mahmoud.
“Being at Bear Cottage allowed us to put a stop to our hectic 24/7 routine and truly be a family. We had the opportunity to rejuvenate, relax and focus on ourselves without compromising Moustafa’s needs.”
“The best part of Bear Cottage is that it accommodates and focuses on the entire families’ needs individually and also as a family and so we are all taken into consideration and are given a voice in our silent world” Moustafas parents said.
Mum Eman says, “It also gives Moustafa a way to make the most out of his childhood. The fact that he can be included in everyday activities without boundaries and limitations means everything to him and to us.”
For Moustafa’s siblings, Aminah (13), Zena (11), Layla (6) and Yusef (4), Bear Cottage provides them with a place where they can escape from their normal reality and enjoy just being kids too.
“Bear Cottage is a world where kids with special needs and their families can be normal, even if it is just for a while. It has given our children the opportunity to enjoy themselves and have some normal, childhood experiences without being judged. They get to meet other kids going through the same thing but most importantly, we all get to enjoying just being together as a family.” says Mahmoud.
Knowing the incredible difference Bear Cottage has made to their lives, Moustafa’s family are encouraging everyone to support Superhero Week this July and help raise vital funds so Bear Cottage can continue to be there for superheroes like Moustafa when they need it most.
“Bear Cottage has given us a rope of hope – we don’t know where we would be without it.”
Wonder Girl - Jamieson
Living in Dunedoo, it’s not easy to do a lot of things. Bear Cottage helps me in many ways.
I’m a 14-year-old girl and I live with my mum, sister and brother. We’ve been coming to Bear Cottage for about six years. I remember when I first came here it wasn’t at all what I expected. I thought it would be more like a hospital but it isn’t, it’s very homely. Everyone is very kind and I feel comfortable talking to people and making friends.
At Bear Cottage I get to do things that I can’t do at home. I know it sounds small, but having a bath is a big deal for me so when I’m at the Cottage, I love to have a long warm bath. They really pamper me; I have my nails done and get my hair cut and styled.
I also love to go for coastal strolls along the beach with my mum. It’s pretty neat that she can stay with me, and so can my sister and brother. I love going on the wheelchair swing - you see, I’m a bit of an adrenaline junkie and I get to go pretty high! Can’t do that in Dundedoo!
This year has been a big year for us. My mum had a pretty bad back injury and had to have surgery. I stayed at Bear Cottage so the nurses and team could care for me whilst mum recovered.
Without Bear Cottage I wouldn’t be able to stay in the hometown of my favourite footy team. I am the Manly Sea Eagles’ biggest fan! Staying at Bear Cottage means I get to go to some of the local footy games. Sometimes, the players visit me at the Cottage and have made some of my birthday celebrations pretty special.
I’ve met heaps of great people through different events and fundraisers for Bear Cottage. Being a creative chick, I love to draw, colour-in complex pictures and create keepsake objects that I can take home. When my mum was in hospital, I made two dream catchers. I kept one and gave mum one, so we were connected and all our bad dreams were caught and taken away. There’s so much opportunity to make things and make memories at the Cottage. I’m always happy when I’m here.
