We spoke to Stacey Morris from Plymouth, whose daughter Maisie, has cerebellar ataxia atrophy.
This summer, our daughter Maisie who is nine years old, took part in and completed the Plymouth half marathon. As part of a school challenge, Maisie wanted to join in to show people that it does not matter if you have a disability, in her words: “you can achieve anything”. We always say in our house there’s no such word as you can’t do something, you can always try.
Maisie trained for a few months prior to the run and it was quite tough on her, but her school and physio team helped build her strength. I was ecstatic when she crossed the finish line, but I was also relieved it was over due to the tiring training she had been through.
Maisie was incredibly happy that she did it as she really did push herself. She completed 11 miles at school and finished the last mile with her school friends and teachers. She was very sore and tired for a week after and relied heavy on her wheelchair, but that didn’t stop her.
Maisie was diagnosed with cerebellar ataxia atrophy at age three. After having a two-year review from her health visitor, we noticed she was unbalanced and her speech was poor. She was sent for a MRI scan and this was the outcome. Since then, she has been diagnosed with hypermobility syndrome, arthritis in her knees, has gene deletion 2p16.3 and has the neuro nrx1 gene and carries Brat1 gene. She also suffers from seizures which are unknown at present.
Our family and I support Maisie as best as we can by following exercises from her physio and hydro swimming. Maisie also loves warm showers and hot water bottles with massages. She has grandparents that have their own caravan in Cornwall so she goes there for a lovely break to relax. We take each day as it comes and live every day to the fullest. We are a big, close family and Maisie has two younger brothers that help her, too. The bad days are bad but we always hold out hope that one day we will find a cure.
For other families in a similar situation, my advice would be to let them try and don’t give up hope. I never in a million years believed Maisie would complete it, but she did and she did it at her own pace, with help from her amazing teacher who held her hand and supported her round. Every child is different and something that may take someone a day to learn, may take our children longer, but so what? They’re unique. Let them have the independence to try, even though it can be scary, know that you’re there to help them up. Let them be them!