Action for Kids

Now Eden has her freedom

Catherine King, 46, from Norfolk explains how Action for Kids makes a difference to families like hers

When my daughter, Eden, now 15, was nine years old she talked my husband and I into buying her a pair of rollerblades. I’ll never forget the look on people’s faces as she put them on, lowered her wheelchair and drove herself down the high street with the rollerblades touching the floor. She was determined to do it regardless of her disabilities.

Eden was born with a condition called Ullrich congenital muscular dystrophy – a genetic disorder that causes weakness and degeneration of muscles. Although it is a condition she was born with, it wasn’t picked up on until Eden was three months old when my GP raised a query about her hips, which were clicky and one was subluxed, meaning it was partially dislocated. We were referred to the local hospital where Eden was given a Pavlik harness to wear for three months, which realigned her hips and sorted out this problem.

Action for Kids

However, we were also given a referral to a neuromuscular condition centre in Hammersmith, London, as our consultant felt there might be another underlying problem. In May 2000, Eden had muscle and skin biopsies done and four months later we were told she had congenital muscular dystrophy.

Getting Eden’s diagnosis was a complete shock. I cried all the way back to Norfolk, thinking about all those things most little girls take for granted – like dancing at birthday parties and wearing high heels – worrying that Eden would miss out.

Eden’s condition is degenerative, so things have slowly changed over time. Her condition affects her arms, her chest down to her lower diaphragm and her legs – it’s a weakness all over. She has gone from walking with callipers to using a wheelchair and her elbows are locked at 90 degrees.

She also suffers from respiratory problems, so is on a ventilator at night, and has had a spinal operation to correct severe scoliosis.

When Eden was 13, we also realised her wheelchair was affecting her health due to its lack of support. She was constantly propping herself up on one arm, so only had use of the other, and the pressure on her stomach was preventing her from eating. It was also causing her a lot of pain.

We were put in touch with Action for Kids and they were absolutely brilliant. They organized a fundraising campaign to buy Eden another wheelchair specially moulded to her shape.

It’s hard to explain the relief and the difference it can make to a family like ours to be given the right wheelchair – it’s such an opening of many doors. Eden is really dependent on me for many things, including getting her ready for school each morning, which takes four hours in total. At the end of this it’s really nice to get her into her wheelchair to feel that freedom and independence.

Eden is now able to press buttons and make things happen and she also has more confidence to go short distances by herself. On weekends, she will go shopping with friends while I have a coffee nearby, and I think it’s so important for her to have that independence and conversation away from adults as she is with carers for most of the day.

My initial concerns for Eden were that she would end up missing out on things, but her condition doesn’t stop her doing anything. She enjoys photography, she loves doing make-up and nails and she is talking about going to university.

Eden does have worries and questions about the future, but we try to stay positive and take things as they come. Despite all she has been through, Eden has never once said to me, “Why can’t I…?” or, “It’s not fair,” and I think that’s just amazing. She is such a happy young lady and such an inspiration.

About Action for Kids

  • Action For Kids supplied its first wheelchair in 1991 and has been helping disabled children around the UK ever since.
  • The charity
supplies pieces
of essential mobility equipment to disabled children and young people – all unavailable on the NHS.
  • It supports young disabled people into work they want to do, and helps them to make their job a success.
  • Independence skills help disabled young people to live their own lives, including social events and life skills such as cooking and budgeting.

Candis Big Give update

Action for Kids raised £11,695 in The Candis Big Give which will provide life-changing mobility equipment to ten disabled children. This equipment will help to give independence and provide opportunities to disabled young people and their families.

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