Building Paul's Independence
Paul is a 21-year old man from Kent. He is a lover of adventure and a bit of a dare devil. He enjoys being outdoors and engaging in outdoor activities, and goes horse riding every week. His proudest moment was when he went abseiling, which was both terrifying and extremely fun.
Paul was born with a very rare condition called Sjogren-Larsson Syndrome and has never met anyone else with the same condition. He cannot stand or walk and has driven a powered wheelchair since the age of 5. He has had several orthopaedic surgeries and has spent a lot of time in and out of hospitals throughout his life. Paul also uses a voice output communication aid that uses symbol sets to help him speak, which attaches to his powerchair.
Paul enjoys being independent and adventurous, but he also needs full care to support all his daily activities and living needs. The biggest supporter of his physical, mental, and emotional well-being and independence comes from his powered wheelchair. This means it must be suitable for his needs by having several specialist functions.
Paul applied to AFK for funding for a Permobil F5 VS, a specialist powerchair that meets all his needs and would be crucial for his independence. The powerchair he was using, which was over 5 years old, no longer met his needs. It struggled to cope with kerbs or small steps and sometimes could not even climb a drop kerb, especially when it was wet. This meant that he was not able to go out to a lot of places and had plan all his activities very carefully. This made it very difficult for him to be spontaneous. The Permobil is super sturdy and built to deal with all types of terrains, so Paul would no longer be restricted to paved roads or find himself stuck, as the it can manage cobbled streets and uneven surfaces.
Another great thing about the Permobil is that it has a riser and sit to stand function. Many of Paul’s friends and peers had sit to stand powerchairs with risers and headlights, making them more independent, and he desired that kind of independence too. Having a powered wheelchair with a riser enables him to go out, especially for a meal, with his family and friends more easily. Paul stated, ‘with my old wheelchair, I would go out with friends for lunch and I was the only one who could not fit under the table in the restaurant as my chair did not go up and down’. Not only is the chair crucial for independence, it also has medical benefits, as it is important for Paul to stand to help his muscles and bones. The Permobil enable him to do stretches whilst in college, on work placement or when socialising as he can change positions himself throughout the day.
Paul’s new Permobil powerchair was delivered in August. Him and his family are over the moon and his mother got in contact to say:
‘I just wanted to share with you the wonderful news that Paul has now received his Permobil wheelchair. It’s absolutely amazing and he’s so excited. It’s amazing how he can now see and do things that have always been out of his reach before, looking out of the window, seeing himself in mirrors and opening cupboard doors. It’s surreal to see him moving around in an upright position. The chair is literally life changing for him and will give him so much more independence as well as many health benefits. It’s been such a boost to him to receive this after months of shielding.’
Paul’s powerchair will also be maintained by AFK and we will pay for all wear and tear and repairs for the life of the chair. Covering the maintenance costs of powered wheelchairs is an extremely important service to offer as the cost of keeping the chair running can often be a massive financial barrier for disabled children, young people, and their families. For many of young people and families we work with, it is not financially viable to pay this, leaving the beneficiary without their essential chair as it becomes unusable. We asked Paul to speak about his experiences, and he gave the following response:
‘I have had a privately funded chair in the past, but this also became very difficult to maintain due to the costs involved. A part like a joystick can be £600 and batteries can be around the same and these are the cheaper things that can go wrong! It’s completely prohibitive for a disabled person who relies on benefits to have a private chair and pay for its maintenance. Having a chair that is properly maintained is crucial though. The chair is my legs and my independence, and I am completely reliant on it. I could never have had my new chair if My AFK didn’t pay for repairs and maintenance, I simply couldn’t afford it on the benefits that I get. The fact that these things are being covered and my chair will be properly maintained gives me peace of mind and confidence in my chair that when I got out it’s not going to suddenly break down. My powerchair is no different to a car, it needs to be serviced and maintained to keep it working properly, the only difference is that I can’t have a hire chair if mine breaks down as the chair and seating is bespoke for me, so it’s really important to keep it in good working order.’
Joey's Green Trike
Joey is a 7-year-old boy from Surrey. His mother wrote to AFK last year for help funding a specialist trike for Joey. In her letter to us she wrote:
‘When Joey was 2 years old, we found out he had Cerebral Palsy (Diplegia). As the months passed by, Joey started to show his own little character and he was put on an intense therapy program for children with Cerebral Palsy for 18 months, and my goodness he was determined to give it his all. He showed us nothing but true inspiration and utter determination to become independent. He amazed us all and learnt to walk independently as best he could, wearing Orthotics to help him balance and position his feet better. We are and always have been a very outgoing family and like to be outdoors as much as we can be. We go to parks often and Joey’s 3 siblings have always ridden their bikes while Joey stays in his buggy.
Joey was recently assessed for a terrier Trike at his therapy and for the first time ever, he was able to ride a bike on his own. The trike had many of adaptions added to it to make it possible for Joey to ride. I can’t explain to you the feeling I felt to see my little boy ride this trike!!! The happiness in his little face said it all to me. With this trike, he would be able to ride alongside his brother's and sister and not have to be wheeled in a buggy next to them. I know it would be great therapy for Joey also, whilst still working to improve his leg muscles as well as his core.’
Joey’s trike was delivered in March and his family got in touch to let us know. They said:
‘The Biggest thank you to all at My AFK for what you did for our family. Joey received his green trike today and I cannot explain how happy it made him. He was full of smiles when it arrived especially as I kept it a secret. It was very overwhelming for me to see. Absolutely none of this would have been possible without you. What you do for people like Joey is truly wonderful. My AFK, you really do make dreams come true. Thank you with all our hearts!’
Jacob's New Powerchair
Jacob is a 6-year-old boy with Cerebral Palsy. He loves to go out for walks with his dog, playing football, and throwing the ball around with his family. He has limited mobility and without the support of an appropriate powered wheelchair, his independence is limited. Jacob's family applied to AFK for help funding a powered wheelchair as he had out-grown his previous wheelchair and needed a new one more suited to his needs. Having a new chair would allow him to build his independence as he grows, enabling him to enjoy outdoor activities, to spend time with friends, excel in school, and go for days out with his family.
His chair was delivered at the end of October and his family got in touch to say, 'We have had the chair for a good few weeks now. It’s brilliant and Jacob is loving it! It’s even going back and forth to school and has given Jacob the independence he needs within his community. Can’t thank you all enough for the help provided, we are extremely grateful.'