Cerebral Palsy

Marion Burns

I wanted to let you know I rely on an electric wheelchair to get about. Many years ago I was very lucky to get an old Permobil wheelchair for free from a friend of a friend, and it was the best chair which I ever had! I loved the comfort, being able to move position while in my wheelchair and get out walking in “off terrain” roads. It was great to drive and it made me feel more independent. Unfortunately the chair was very old and parts of the chair were broken and extremely hard to source parts to fix it. So I set my sights on a new one... 

As I loved my chair so much I contacted the supplier, which was Permobil, and last April a representative came to my house with the newest model of the chair to try out.  The minute I started to drive it, it was like dream to drive and the seating was pretty good for me. I had made my mind up this was the chair for me. 

After receiving the quote for the chair, which was over £12,000, I decided to start the big challenge of raising the funds to get myself this chair. The first thing I did was set up a JustGiving page to see if I could get off to a start. I wrote a good story about myself, stating how important the new chair would make to my life. I shared this page with my friends on Facebook and asked them to share to as many places as they could. I was thrilled with how generous people were. I then started thinking about doing events and decided to hold a race night, which was a great night and a big success with a lot money raised. Very generously my sister did a sponsored bike ride in January 2018 and an old school friend of hers ran The Great Scottish Run in October 2017. They both did very well and raised a great amount for the pot.  

My mum and I then wrote to many trust organizations. Because I am an adult it was for very difficult to find trusts that could donate to an individual plus an adult. Some of the trusts which gave me grants were The Bruce Wake Foundation, The Act Foundation and The Elifar Foundation. Some of these trusts had application forms to fill in which was time consuming because they were very detailed and some just needed a letter. I got supportive letters from my therapist from Bobath and my GP which was very important as it showed the trusts how beneficial it would be to me. I also wrote a very detailed story about myself to put into the application. Some trusts I found on the internet and others were recommended to me.

Early in 2018 we got told the price of the chair have been dropped by £1,000 which was very good news meaning we were on track to get the money sooner. In total it took me roughly 9 months to get the grand total. I ordered the chair and within 4 weeks it arrived all the way from Sweeden! The service Permobil offer is great. The representative comes out to fit the chair to you and then is coming to visit me in a few weeks’ time to make any adjustments that need done. This has given me a chance to find out what needs to be altered. Apart from a few teething issues this chair is amazing!

My top tip: Fundraising for a wheelchair or any other piece of equipment can be a long process and it sometimes can be frustrating! So my advice is if you would like a new wheelchair or equipment make sure that you have plenty of time and you have patience. 

Good luck if you are planning on fundraising.