By Lyndsey Kaye
Riley was just 3 years old when he was diagnosed with Duchenne. There was no history of it in my family, so it came as such a shock. I remember feeling like my world ended that day. It didn’t, of course. My son was still the same smiley happy little boy he had been before. It took me awhile to realise that what had changed, was me. The emotions that ran through me after he was diagnosed were like a river of sadness, grief, and even anger. Why us? Why my boy? I bet many of you newly diagnosed families reading this feel exactly the same. I promise, that feeling of helplessness eases over time.
Impacting lifes
Then came Action Duchenne. I found them via Google during an insomnia filled night: and read many of the parent/ carer stories. So much of what was said resonated with me, and how I was feeling. So, I reached out to them. It wasn’t long before the fabulous Lynnette came into my life. To start with, she was regularly at the end of the phone to listen and answer questions, and it was she who first told me it was entirely OK to feel how I was feeling. I met her in person, and she assured me that this wasn’t the end: far from it. Riley had a story to tell, and I was a big part of it. She also helped me in a huge way by showing me a way to discuss Riley and Duchenne with my 2 older children, which was a huge hurdle for me.
I now actively fundraise for Action Duchenne when I can. Over the last 2 weeks alone our federation of schools raised a huge £642 and held an inspiring assembly (attended by Lynnette) to raise awareness for Duchenne. So many people have never heard of this disease, and I am now so happy to hear from my friends that their young children have been talking about it and asking questions. My best friend (and Riley’s honorary Auntie) is taking part in a continuous 100km walk in July to raise money and awareness too and she is already smashing her Just Giving goals.
Riley’s story
This brings us to now. Riley is 5. He is in reception year in a mainstream school. We are a year into a global pandemic. Things have been beyond comprehension for everyone who like us, were advised to shield initially. He is such a happy boy. He loves school. Everyone there is amazing with him, in particular his class teacher Miss Vaughan and his 1:1 support Mrs Perry, who very kindly provided the following quote about Riley.
“Riley is a very important part of our school and is teaching us all so much, particularly in regard to inclusivity and learning from each other. Riley often surprises me by achieving things that I did not know he could do- it is always worth offering an opportunity. It is an absolute pleasure to work with Riley as his 1:1 support in school; to have gotten to know him and his amazing family, and to be part of his story – Lyndsey and Matt, thankyou for sharing Riley with us all at our school.”
It’s an honour to have been asked to write this, and to give something back to the Action Duchenne family.
Lyndsey and Deborah’s fundraising
“I hit £1,500 and burst into tears – people’s kindness and support is beyond words!” WOW! take a look at the awesome Deborah Holland’s incredible fundraising page for Action Duchenne in support of her best friend Lyndsey Kaye
She’s hit £1,500 which, through the help of her friends and family, is an amazing achievement. Thank you to every single person who has helped support Deborah and of course, Riley, Lyndsey and their family.
Translarna accepted by Scottish Medicines Consortium
