Peer to peer support – Chloe and Lyndsey

This article is written by Duchenne parents Chloe and Lyndsey who were carefully matched by our Support team.

Chloe

In Jan 2021 we officially had our son’s Duchenne diagnosis. When I found a time when I could actually talk about it I can across some amazing communities and people who have helped me to understand things a bit better.

I came across Action Duchenne who both Lynnette and Sam have been amazing, such lovely people and we arranged a few video calls which was just like talking to a friend really. 

Jenson doesn’t have Duchenne diagnosis only he also has autism and is non verbal along with global development delay.

It’s utterly heartbreaking for any parent or carer knowing your child has Duchenne, but it torments me that he also battles with the rest as he can’t communicate verbally and sometimes it’s a guessing game I’ll never take for granted the little things. 

I’ll be honest I’ve spoken to so so many amazing mums, carers, relatives along the way I was informed by our Neuromuscular advisor at the time some years ago that many children have autism or global delay alongside Duchenne.

I went to a day event with other families and I didn’t meet one family. So I began to feel perhaps it wasn’t as common as they say. I have met a couple mums online whose boys do have either or since that day but not all three. 

So for many years I’ve just accepted that perhaps Jenson’s case is rare.

After speaking with Sam she asked if she could introduce me to another mother who’s son sounded very similar to Jenson. That’s when I got introduced to Lyndsey I was excited to know more, as this journey can be very isolating. 

Support

We live very far from each other but for once since becoming a first time mum to Jenson I can speak to someone who completely gets it. Absolutely everything I’ve never met a mum who’s child is just like mine.

I embrace Jenson’s quirks as I call them but Autism in itself is extremely challenging some days and beautiful on others. We just hit if off straight away and chat most days. 

I’ve recently began Jenson’s journey on steroids which was a tough decision as I’ve had to think of all avenues of how we can get the medicine in him as he doesn’t understand and also to finally find a solution that isn’t a tablet.

Understanding

It’s a challenging journey and I don’t know how it will continue in the future but we wanted to try and I have Lyndsey who has shared her experience with her son.

I’m extremely grateful for being put in contact with her, she’s helped me so much. I like to think we keep each other sane, through the sleepless nights, meltdowns and good and bad days I’m always happy to be there for any Duchenne parent. Whilst we ride this crazy wave of being a DMD parent.

Lyndsey

Through Action Duchenne I have met many amazing people. Many of these have children not only with Duchenne but with autism too.

Recently the charity matched me with a lady who has a son very similar to Riley. That’s what I was told. Riley is 6, he has Duchenne, autism, and is completely non verbal. I have never met another child like him.

Shared experiences

That is until I was paired with the lovely Chloe. Chloe’s little boy is a year younger than Riley but oh my goodness, they are so alike!

Chloe and I hit it off instantly. We now text daily to check in with each other and to discuss whatever trials and tribulations we are currently facing with our boys.

Never before have I had someone else who understands what it’s like to face all the hospital appointments Duchenne brings with a non verbal child who completely doesn’t understand what the doctors want from them.

Shared experiences

Having a bad day? Chloe is there and she totally gets it.

Riley achieves a milestone that to most would seem insignificant. Chloe is there celebrating with me.
I am beyond grateful to Sam for introducing us to one another.

Start a conversation with us. We can offer you the same kind of support as Chloe and Lyndsey, please get in touch via info@actionduchenne.org.