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Lights, camera, action!

Millie Mae Ormsby is a huge fan of Justin Bieber, has her own website and social networking pages, enjoys outdoor activities and is about to star in a video.  Not bad for an 11-year-old!  But Millie Mae also lives with two rods in her spine, wears splints on her hands at night, has regular visits to hospital for physiotherapy and to see various specialists as well as taking 18 tablets every day.

The diagnosis in 2010 turned Millie’s world upside down, and dealt a devastating blow to her parents who didn’t want to believe their daughter could have Freidreich’s Ataxia.  The reality was that over time, as well as the problems Millie already suffers with balance, (one of the first indicators of the condition), her mobility would become severely restricted and she would suffer problems with her heart, develop diabetes, and ultimately become almost completely dependent on other people.

Finding Ataxia UK was a turning point for Millie’s family.  It opened the door to new world of possibilities and genuine hope for the future.  Ellen, Millie’s mum, said, “When Millie was first diagnosed, we looked it up on the internet and were terrified to read what it would mean for our daughter.  But speaking with the experts at Ataxia UK helped us to put things in perspective and understand how we could expect her ataxia to progress and what positive things we could do to help her.” 

Ataxia UK supported the Ormsby’s when they most needed advice and guidance and the family are now working tirelessly to do all they can to raise awareness of the condition and raise funds for research.  They have already raised thousands of pounds from organising a skydive and bungee jump.

Millie Mae and her parents have agreed to be a big part in the ‘2020 Vision – Aiming for a Cure’ campaign that will be launched by Ataxia UK in late September and have been filmed for a video that will be released through the social media networks.  The campaign is a bold move designed to inspire everyone connected with the organisation into doing all they can to fund the necessary research with the aim of finding a cure or effective treatment for one or all of the ataxias by the year 2020.

The key lies in advances in genetics and stem cell research, which it’s hoped will make a real difference to people with ataxia.  Researchers have already made progress in determining the cause of some types of ataxia, the next step being to develop drugs to slow down its degenerative nature and ultimately, reverse the damage already done.

Your donations are helping to support young people like Millie and to give hope to her and other people with ataxia, thank you.

You can find out more about Millie at www.milliemaesworld.co.uk.
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