ABOUT OUR CAUSE – A NEW STANDING POWERCHAIR FOR ZOFIA

Zofia has Spinal Muscular Atrophy Type 2 (weak), a neuromuscular condition which affects the nerves that control muscle movement and has resulted in total body weakness. Zofia is not able to roll, crawl or stand, and she can only sit with support of brace and appropriate chair. She has limited movement in her arms, but with sensitive set up she can drive a powerchair – and is very good at it!

She has pain at the base of her spine and in her hips and knees for which she has to frequently alter her posture. Zofia also has difficulty supporting her head, and needs to wear a spinal brace. She also has to wear splints on her legs and wrists. Eating is difficult for Zofia, so she gets most of her food via gastrostomy tube in her tummy. She also had breathing difficulties and has to use ventilator (BiPaP) at night. Despite having severe physical disability, life limiting condition and complex medical needs, Zofia bravely raises to the challenges of a mainstream school, with one-to-one assistance. She likes going to school and having playdates like every other child, but her access to education and social life depends on having a fully supportive, multifuctional powerchair.

Zofia had a powered wheelchair from a charity at the age of two, and it's now too small for her, doesn't support her properly and doesn't have the functions she needs to help her with everyday life  - such as reclining so she can lie flat, stretching her legs to reduce contractures and raising her to stand or tilting so she can change position to relieve pressure.

The new Permobil powerchair will help relieve Zofia's pain as she'll be able to change position easily as well as improve her general wellbeing. She won't have to be lifted and maneuvered by her parents and carers so much, so there will be less chance of injury. Having a chair that can lift her into a standing position also means that she can speak to people eye to eye and really gives her a different perspective on the world, helping her at school and to socialise with others.

However, Permobil C400 VS JR powerchair costs over £20,000, so we turned to Newlife Foundation for Disabled Children - the UK's largest charity funder of children's specialist disability equipment for help. We pledged to raise £5,000 ourselves towards the cost of the power chair and are currently planning fundraising events which will be featured here – so come back often to see how you can help and join in the fun and games.

ABOUT SMA

SMA is a genetic neuromuscular disease, which means it is inherited and affects nerves responsible for muscle function. Although classified as rare, SMA is the leading genetic killer of infants and toddlers, with approximately 95% of the most severely diagnosed cases resulting in death by the age of 18 months. Children with a less severe form of SMA face the prospect of progressive muscle wasting, loss of mobility and motor function.

1 in 40 people is an SMA carrier, i.e. approximately 1.5 million people in the UK.

1 in every 6,000 to 10,000 births is affected by SMA. At any one time, it is thought that there are between 2,000 and 2,500 children and adults in the UK living with SMA.

ABOUT JustGiving

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