Max won ‘Media Student of the Year’, and thanks to his supportive twin sister, Evie, he was able to collect his award himself. We spoke to his mum Jayne who tells us about Max’s ataxia journey.
Trying to get a diagnosis
Max starting falling from around the age of three years old; he said he would “trip over his own feet”. He had to try twice as hard as his twin sister Evie to do things like learn to ride a bike and swim, but he always put that extra effort in and managed to successfully learn both!
Before his ataxia diagnosis, Max was very sensitive to noise and cold, and I wondered if he might have dyspraxia. I took him to the GP who told me there was no such thing as dyspraxia and Max was just clumsy. Max also had severe foot pain but, after lots of investigation, I received a letter from the orthopedic consultant that more or less said I was a neurotic mother, that Max was “as fit as a flea”, and “I have assured Max’s Mother there is nothing that will, in any way, affect Max in the long term”!
Max was later diagnosed with Friedreich’s ataxia (FA) at age 14. We luckily saw a locum who knew about ataxia; he noticed Max couldn’t balance with his eyes closed. He referred Max to a neurologist, and a while after we received the diagnosis of FA over the phone.
After not hearing from any health professionals for over three months, we decided to tell Max. Unsure of what to say, we chose to be honest and upfront about it. All Max seemed to want to know was how many people in Weston have it.
Media is his Max’s thing!
Max loves playing Xbox and editing videos; spending hours creating impeccably timed and perfected clips. Max was thrilled after hearing his name called for ‘Media Student of the Year’. It was lovely to see Evie helping him too. They’ve always been close; as they keep reminding me – “We’ve known each other since before we were born!”
I am thrilled that Max was accepted on the trial. Max was the last person to be accepted worldwide. At 16, he was also the youngest person on the trial worldwide. It was a tough decision to make as we had to give up all medication he was previously taking, especially as I was making a decision for my child and not even for myself.
We have to make regular trips to London, sometimes visiting up to four different hospitals, but Max never complains. He’s such a star! I have told Max that many people have said thank you to all the participants but he just takes it in his stride really.
Words of wisdom
In the words of Max, “Do things while you can”. I think the motto “Live for today” is something that we’ve all started to live by since Max’s diagnosis. Max also said: “Remember there is always someone worse off than you”, and he certainly does consider his strengths and focuses on what he can do, rather than dwelling on what he can’t.