Strength and Resilience

07 Jul 2021

Angelina and her family have somehow found superhero strength they never knew they had, after receiving a devastating diagnosis two years ago.

Angelina is 16 and lives with Lafora disease; a sadly incurable disorder that affects her whole body but mainly her 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 out with her friends. But today she can no longer go to school, read and write or even hold a pen. In 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 has been so hard 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 her 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 the family are thankful, but at some point they know she will become bedridden. Through it all, Angelina's sparkling personality and determination shines 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, even superheroes need support and when Angelina's family needed this the most, Bear Cottage was there.

Bear Cottage is somewhere the whole family can escape to for much needed respite. It has become their home away from home - a place to relax, make memories and connect with other families, 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 because daily life doesn't stop."

Bear Cottage has never been more vital for families like Angelina's. With the future so uncertain for Angelina and others like her, mum Niki encouraged everyone to support Superhero Week in July 2021. 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."

Related Posts

Game-changing medical technology installed at The Children’s Hospital at Westmead

Giving Day Spreads Joy to Kids and Health Professionals In Hospital

On Tuesday 5 December 2023, Sydney Children's Hospitals Foundation first Giving Day was a ...

A Chance to Feel Special

Capital Update (February 2022)

$1 million donation allows Genetic Predisposition Testing for Childhood Cancer at Westmead

Kids with Cancer Foundation has committed $1 million to fund a genetic predisposition serv...

Art of the Hospital

A Movement of Many, fighting for the health and wellbeing of all children in an ever changing world.

See how the Movement of Many are helping sick kids

See your impact
Collage of Sydney Children's Hospitals Foundation staff and donors making a heart symbol with their hands