Nicola White has written about her son Jordan, who has Friedreich’s ataxia, and her experience as a parent. She talks about the difficulty he has faced in getting around school, the frustration she feels in not being able to help him, but also the pride she feels in his attitude to accept his ataxia.
“Jordan was diagnosed last year with Friedreich’s ataxia when he was 14. He will be 16 in December, and unfortunately we have already noticed a deterioration in his condition. He needs to use his mobility scooter to get to and from school, and he uses a walking stick to help his balance when walking short distances. As well as – and because of – Friedreich’s ataxia, Jordan also has cardiomyopathy and scoliosis.
The hardest part of Friedreich’s ataxia is that I, as his mum, can’t do anything to help him. Initially I even felt guilty, because I carried this genetic code to a condition that I didn’t even know existed before his diagnosis.
Jordan is coping well since he was diagnosed; although he has tough days, I am inspired by his determination to not give up and to keep going. His school have been supportive and have done everything they can to help him. When some kids were making nasty remarks about him, they dealt with them immediately, and Jordan even helped a teacher write a speech about ataxia that was read out during each year group’s morning assemblies to try and educate the students, which was well received by the students.
Earlier this year, his aunties and uncle decided to do the Tough Mudder challenge to raise money for Ataxia UK, which we went along to, to cheer them on. We take each day as it comes, just making sure that he is supported every step of the way, and we hope that one day there will be advances in the understanding of Friedreich’s ataxia and maybe even treatments to help.”