Jayne Hatchard lives in Southwick (near Brighton), with her three-year-old son, Tyler, who has Duchenne muscular dystrophy. Jayne talks about Tyler’s diagnosis in 2015, and how she is preparing to jump 15,000 ft for Make Today Count, Muscular Dystrophy UK’s skydiving event.
Tyler is cheeky, happy, and has a lovely sense of humour; he is a beautiful little character. He likes typical boy things, but his favourite thing to do at the moment is playing on his tablet!! He also enjoys watching his favourite cartoons – Paw Patrol and Peppa Pig.
Tyler was a late developer, he bum-shuffled rather than crawling, and it took him a long time to learn to walk, at around 21 months.
It was the nursery teachers who noticed something wasn’t quite right with Tyler. They mentioned it a few times, before I took him to see the GP. I was assuming that I was going to be able to go back to the nursery and tell them that they were wrong, and that Tyler was fine.
The GP did a walking test with Tyler, and from there, we were referred to Worthing hospital where various tests were carried out. The first blood test showed really high CK levels, but a second genes test was required before he could be officially diagnosed. This test came back as inconclusive, so a further genes test was carried out, which finally confirmed that it was Duchenne muscular dystrophy.
It was a really tough time for the whole family. Just before Tyler’s diagnosis, Tyler’s Dad (David Standing) and I had decided to separate, and we both coped with the news in very different ways. I was looking for answers, and was busy doing research on Muscular Dystrophy UK’s website and via the NHS. Dave was a bit more hesitant in researching the condition until we had the formal diagnosis.
I called Muscular Dystrophy UK’s helpline, and also received a newly diagnosed pack, which was full of lots of really helpful information. MDUK have been great, I’ve built a great relationship with Anneke on the fundraising side of things, we speak regularly, and her support has been invaluable so far.
I rely on my parents, sisters, and close friends a lot, for help and support – so many people have been so kind since hearing about Tyler’s condition. The emotional impact of Duchenne can really take its toll, and I know it is only going to get harder as Tyler gets older.
We go to the Duchenne update meetings that Muscular Dystrophy UK organise. It’s good to meet other families living with the condition, and find out the latest news on research.
Tyler is still very young, he doesn’t really understand his condition yet. We tell him his legs aren’t as strong as his friends, so he understands how important it is to do his stretching exercises.
Life hasn’t changed too much for us so far. Tyler has been given night splints, or as we call them ‘super hero shoes’. Currently he wears them after his bath in the evening while watching some telly, we feel he’s a bit young to understand wearing them to bed, but that is the ultimate goal down the line.
Talking about things really helps. Tyler’s dad and I have seen a private counsellor to help us cope with the situation, and the hospital has talked to us about the other emotional support that is available.
Tyler has already been awarded the mobility part of the disabled living allowance (DLA), and we’ve applied for a blue badge recently. So we are trying to do anything to make all our lives a little bit easier.
I try not to think about the future too much, and try to just take each day as it comes. There is lots of research taking place, and I’m really hopeful that better treatment, and hopefully a cure will be found soon.
I hope that there is a way of speeding up the waiting time for diagnosis results. It took over 4 months for us to receive the results of Tyler’s formal diagnosis – it is too long and painful for families to have to wait.
On 27 February, I will be jumping out of a plane for Muscular Dystrophy UK’s Make Today Count skydiving event. I will be joined by Tyler’s dad along with 12 friends and family, and together, we are making today count for Tyler.
Together, we pledged to raise £5400 for MDUK and our current total is £6500, however we are hoping to increase this as much as possible over the next few weeks. I’m a mix of scared and excited when I think about jumping 15,000ft out of a plane, but knowing I’m doing it to raise money and awareness for MDUK and most importantly for Tyler makes it all worthwhile.
Sponsor Jayne: https://www.justgiving.com/maketodaycountfortyler/
Find out more about Make Today Count and how you can get involved by fundraising: http://www.musculardystrophyuk.org/events/make-today-count/