25 September 2012
Most people have never heard of ataxia. If you haven’t, it’s probably because no-one you know has been affected by this heart-breaking degenerative neurological condition.
If you have heard of ataxia, you may know that it is a condition that affects the brain and central nervous system. It affects over 10,000 adults and up to 2,000 children in the UK today. There are various types of ataxia; the most common forms lead to a gradual loss of all physical bodily function whilst the mind remains perfectly clear. Ultimately, it is usually the cause of death.
Now, as the organisation that looks after the needs of people with ataxia, we begin a new campaign aimed at finding a cure within eight years. Launched today, International Ataxia Awareness Day, the campaign features 11 year-old Millie Mae Ormsby from Tamworth. Millie Mae was diagnosed with Friedreich’s ataxia at the age of eight. She suffers with scoliosis caused by the ataxia and has had to have surgery to insert rods into her spine which are adjusted every six months as she grows.
Her mother Ellen realises that Millie’s diagnosis is a life sentence: “When Millie was first diagnosed with ataxia I hadn’t heard of it. I googled it and I was utterly devastated,” she says.
Millie Mae and mum, Ellen.
“I don’t know what the future holds for Millie. 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 and talk properly again, and do all the things other children do.”
Because of the plight of people like Millie Mae, Ataxia UK has now set itself the bold target of finding for a cure for one or all of the ataxias by the year 2020. Called “2020 Vision” the organisation’s CEO, Sue Millman, thinks it’s a realistic aim: “We’re really going to do all we can to encourage donors to support us in funding the research,” she says.
“Progress is being made all the time. The prospects of finding a cure or an effective treatment for the ataxias are better today than they have ever been. But, as with all neurological conditions, we must tread a fine line between promising something which may not be delivered, and giving genuine hope.
Research offers hope
“Nevertheless, the advances made in genetics, molecular biology and stem cell research over recent years offer that hope. But it comes at a cost. So 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.”
Millie Mae features in a new short video launched today by Ataxia UK on YouTube. She also has her own website, Millie Mae's World, which tells the story of her struggles with Friedreich’s ataxia.
How you can help
Anyone wishing to help Millie Mae and the thousands of others like her can text: ATAX20£5 to 70070 to donate £5 to Ataxia UK. Or donate online here.
You could also download and print the 2020 Vision leaflet to help raise awareness in your area or at work. Click here to download the PDF (4MB).