A 'Freedom Chair' for Izzy

My beautiful daughter Izzy has faced some very challenging changes in her health and well-being. Izzy has learning disabilities and Autism. She was diagnosed with Soto’s syndrome in 2007 and then rediagnosed with Malan syndrome in 2021, a rare genetic condition. Izzy didn’t walk unaided until she was 4.5 years old and used a wheelchair when she was much younger. But as she grew, she became very confident and able to walk independently, run, jump and climb.

Izzy has always loved music, dancing and singing and is a very sociable young lady who loves people and visiting places. We used always to be out and about. She even followed her dream to be on stage dancing with a street dance company, always bouncing about and full of zest for life.

In January 2018, everything changed. Izzy became very unwell, seemingly unable to move her head, walk unaided, or to eat and drink. Izzy would not speak or move without help for 7 to 10 days. Then it seemed whatever had been affecting her, suddenly went and she picked up very quickly, returning to her usual self. She began eating and drinking well and putting back on the weight that she lost. This cycle has continued, without any apparent pattern, over and over. Izzy was soon diagnosed with Chiari Malformation, where the lower part of the brain pushes down into the spinal canal.

So, I have become a Mum on a mission. To give Izzy the best life she can have even when she is feeling so unwell. I know what she wants in life. To be an active part of the community, to feel valued and appreciated which is something I have always strived to do. I have always wanted to ensure she has the same opportunities as everyone else to lead a happy and fulfilled life. Having the Chiari Malformation has made this a lot more complicated. Due to her extremely changeable health and abilities, it is hard to find equipment and resources to assist her in maintaining as much independence as possible.

There is, however, an answer to the problem, aptly named 'The Freedom Chair'. This amazing powered wheelchair is specially designed so that when she is well she can drive independently and go wherever she wants to go. But equally, when she is unwell, it will give her all the support, comfort and safety that she needs.

As a family, we all miss being able to go to the woods, go for long walks and outings that are often things that people take for granted. The Freedom Chair is specifically designed to be used outdoors, has good suspension and also folds and comes apart so we can fit it in the car as we set off for adventures! A company called Prime Comfort brought a chair out for Izzy to trial. Izzy was well at the time and took to it immediately, loving being able to drive independently up and down the garden. Her joy brought a smile to everyone's faces. The company were so thrilled to see this they have offered to assist us in funding this chair by giving us a free headrest and an extra battery.

Although we are still undergoing investigations for Izzy’s deteriorating health, this chair would give us some much-needed opportunities to spend time out as a family with Izzy feeling comfortable and we can make memories together during those times of feeling well enough to leave the house.

£3000 is a massive amount of money to raise by myself, and I would be so grateful if any of you would be in a position to make a donation of any amount to help this very special young lady live the best life that she can.