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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.”
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-energize,” 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.
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 with-out 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 super human 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.”
To get involved in Superhero Week, visit superheroweek.com.au
Dynamic duo - Jen and Alexander
Jennifer and beautiful little Alexander are two of our very special Bear Cottage Superheroes.
Two and a
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.
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.
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?”
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,
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