A 13-year-girl from Doncaster who has bones so fragile they can easily break, just from being lifted, urgently needs a specialist mobile hoist to allow her and her mum to leave their home together for more than a few hours so they can enjoy experiences together and make memories.
Carla has Rett Syndrome, a rare and progressive genetic condition that results in severe mental and physical disabilities. As a result of her condition Carla can’t walk or talk and needs to be ventilated at night to help her breathe. She also has recurrent chest infections that mean she is frequently admitted to intensive care, has seizures, and has a curvature to her spine and is tube fed.
Carla also needs six monthly injections to strengthen her bones as they are so fragile that fractures have been caused to her shoulder while being dressed and to her knee from just moving in bed.
A full-time wheelchair user, Carla loves to go to the beach, but trips of more than a few hours away from their Bircotes home are now impossible because they don’t have a mobile hoist of their own to ensure she can be lifted safely to attend to her personal needs.
Without a portable hoist, they can’t visit family, friends, or go anywhere that is more than an hour away, unless Alina can be certain of being able to access disabled changing rooms, which are equipped with a hoist and changing table – which is sadly rare.
Now Newlife the Charity for Disabled Children has stepped in to launch an appeal to help provide the £2,450 mobile hoist which will give them the freedom they desperately need. Newlife is the largest charity provider of specialist equipment in the UK.
Alina said: “We need to be very careful of her bones so she can’t be hand lifted, but she is too heavy for me to lift myself anyway as she weighs the same as I do. A hoist is the only way she can be lifted, but the ones we have been able to loan from the Red Cross to go out to different places are no longer available, and I haven’t been able to find anywhere else I can loan them from.
“We can’t rely on their being hoists available in disabled toilets either – when we go out Carla needs to be changed every few hours due to skin pressure sores. When we had to go to appointments in. London for example, I was looking on the map for changing places with a hoist, but when we got there surprisingly there was no hoist, or the place was closed.
“Without a hoist we are stuck at home, not being able to go far. Having our own foldable mobile hoist would mean so much to us. We would have the freedom we need to visit places and friends without being stressed about the time, and we could even go on overnight stays which will help us to make more memories with her while we still have her.
Kam Dulai, Newlife’s Child and Family Support Manager said: “It’s vital that Carla has the mobile hoist she needs to keep her safe and being able to travel for more than a few hours will boost her quality of life, allowing Carla and her family to enjoy new experiences together.”
Anyone who can donate to this appeal will be directly helping Carla – and her family is incredibly grateful for any support received to help fund her appeal.”
Always get the bill payer’s permission. Any money raised above the amount needed for a specialist hoist for Carla will be used to help other disabled and terminally ill children in need.