A brave teenager with a rare inherited disease has been given a new lease of life after receiving a bespoke tricycle from local fundraising group, Simon’s Heroes.
Millie-Mae Ormsby (14) has Friedreich’s Ataxia, a group of neurological conditions that gradually attack the nervous system. There are many different types of Ataxia, all with varying causes and symptoms. Although rare, the most common type is hereditary and affects around 10,000 adults and 2,500 children in the UK today. It usually begins in childhood and leads to impaired muscle coordination that worsens over time. The spinal cord and peripheral nerves degenerate, becoming thinner. The condition also causes orthopedic problems, heart disease and diabetes. The disorder does not affect thinking and reasoning abilities. Most people with the condition develop Scoliosis (a curving of the spine to one side) which often requires surgical intervention.
Millie-Mae was diagnosed with Fredreich’s Ataxia at age 8. Her mum Ellen had noticed a lump on Millie-Mae’s back. Further investigation revealed that her spine had curved more than 70%. She underwent corrective surgery which involved attaching rods to her spine. The operation lasted some 9 hours. Every 6 months Millie-Mae has to have surgery to lengthen the rods to allow her spine to continue to grow.
She also suffers from Cardiomypathy; chronic disease of the heart muscle, a condition also associated with Ataxia. Her symptoms include heart palpitations, weakness and fatigue.
Millie-Mae has undergone surgery on both of her feet to reduce her high foot arches which were causing her to fall over. The condition, known as Pes Cavus (claw foot), meant that Millie was unable to flatten her feet when she walked. She had to wear casts on her feet for 8 weeks and it was during that recovery period that the Ataxia escalated, further limiting her mobility.
Millie-Mae hasn’t been to school for the last 18 months because she is struggling to find somewhere locally that can offer her the support she requires. She has an hour’s tuition at home every day, which her mum acknowledges is not sufficient, yet there is limited funding available. Millie-Mae feels isolated and lonely being away from her peers and friends.
Millie-Mae is a very bright, beautiful young lady who is spearheading the Ataxia 2020 Vision Campaign which has set itself a target to find a cure for one or all Ataxias by the year 2020.
‘We are doing all we can to encourage donations and Millie-Mae is proving herself to be a wonderful talisman for Ataxia UK and all those affected by ataxia.’ Sue Millman, CEO Ataxia UK.
Millie-Mae’s mum, Ellen Owen, has raised thousands to date for the cause through various fundraising activities including a skydive and bungee jump! Ellen’s partner Keith Jukes recently ran the London 10K to boost awareness and funding and Millie-Mae is planning her own charity ride later this year on her new trike to raise even more. She is also intending to donate some of the monies raised to Simon’s Heroes.
Despite her condition, Millie-Mae is reluctant to be confined to a wheelchair, her willpower is invincible. She is not giving up. ‘I don’t know what the future holds for Millie-Mae. I just hope that she’s as happy as she can be. But more than anything, I hope they can find a cure for her. I pray every day that there’s a cure out there somewhere and that she’ll be able to walk properly again. She’s very kind and inspires other people not to give up and she manages it with a smile.’ Ellen Owen.
‘Thank you to Simon’s Heroes for my trike. It gives me independence and a sense of normality when I ride it. I am enjoying regular trips out with my mum and dad. It has given me a new lease of life.’
To find out more about Ataxia and how you can help Millie to make a difference visit www.ataxia.org.uk
Simon’s Heroes began as a simple running and fitness club, which aimed to help worthy causes through sponsored events. The club has now grown into a major charitable organisation with dozens of dedicated members providing funds for children in need.