We are together, with you

“Holding it together when I was speaking at the Newly Diagnosed family event” was one of my colleague’s proudest accomplishments this week. We were talking as a team in our weekly meeting and it really struck a chord with me. In our support roles, here at Action Duchenne, the team (myself included) speak with hundreds, if not thousands of Duchenne families every year. We are the people on the ground, offering the best level of support we can to everyone. Every. Single. Person, that comes to us for support.

In each call, or video or meeting (when we are able to) we pride ourselves in maintaining an absolute laser-focus on the family that we are supporting at that moment. We offer a warm and welcoming environment for them to share their inner feelings, what is troubling them and, as we are fellow Duchenne parents, we understand without them needing to explain. It’s a unique level of support and one that makes an incredible impact on the families receiving the support.

It is truly all about them.

And then we get to a big event, like last Saturday’s Newly Diagnosed event, and it becomes about not only the families, but also us, as we share our lived experiences.

This is where it gets tricky.

Normally, it’s always about the family we are supporting, but at these events we, the Action Duchenne team open ourselves up. We share details about our lives that we wouldn’t normally, and it takes a great deal of concentration to ‘hold it together’ as my colleague aptly said. Ironically, in support calls with families, we urge them to share, that they don’t have to ‘hold it together’, that it’s us, we understand. So why did we have to ‘hold it together’? Well, we were in front of dozens of courageous Duchenne families from across the globe, who each tuned in to get support, learn and get information from a team of people who have walked the path they are on, who ‘get it’ and completely understand what they are going through.

We had a big responsibility.

And I am proud as punch to say that we absolutely shined that afternoon. As a team, we came together and demonstrated one of our core values, ‘we are together, with you’.

Using my voice for good

When I first decided to dedicate my working life to Action Duchenne, nearly 6 years ago, I wanted to use my voice for good and to help people. I wanted to help amplify the voices of fellow Duchenne families, and I wanted to give support to people at all stages of their journey.

When I was asked to host the Newly Diagnosed event, it was a no brainer for me, as it gave me the opportunity to amplify my amazing colleagues’ voices, to help them present their lived experience and offer support to families who really needed it.

The first time we’d embarked on an event specifically for newly diagnosed families was at the most recent face-to-face conference back in 2019! We had a small gathering of around 15 parents for an informal breakfast and coffee just before the main sessions started. It worked exceptionally well. It’s a big deal for families to come to such a large event (over 500 people attended) and I was able to put them at ease, and make them feel confident to take on the rest of the weekend. They also, and most importantly, met other newly diagnosed families, in the same position.

It was always going to be more tricky running events online, but, after the first virtual Newly Diagnosed family event last year, we knew the concept worked.

Ready for action

So, we were all set up, ready to go live for the newly diagnosed event. I had my two computers, with multiple monitors, showing the Zoom link, the chat box, the prompts, the live stream. Lipstick was on, hair looking very blue, water handy. I was ready.

And then I read through my introduction, including the section about my son Samson. And I broke. I couldn’t do it. How could I tell the world that story? The story I have shared so many times at fundraising events, to strangers in the street, to people when they ask me ‘why’? The story of not knowing how I could go on after hearing the diagnosis. The story of picking myself up, and taking on this role, of the work I do for Action Duchenne.

I couldn’t tell that story because, at that moment, my heart broke again and I remembered. I remembered that my son’s life could be cut short by his genetic mutation in the dystrophin gene. I remembered the loss and anticipated grief I felt. I remembered his beautiful, shiny little face, with eyes like my Mum’s and a nose like mine.

For that split second count-down as the tech guy counted me in .. 10…9…8… I couldn’t move. My heart was bursting out of my chest. I wanted to run.

But I didn’t run, I couldn’t.

I saw my team on the screen, I saw the families flooding onto the app, the families that were logging on to hear from us, their life-line for those 4 hours. I brushed myself down, straightened my shoulders and smiled. ‘A warm welcome to you all, I’m Lynnette and today I’m proud to be your host’. For those of you who noticed a little sparkle of moisture in my eyes at that moment, you were right, I’d broken my heart again, just a little.

But, as always, I picked up, smiled, got my mojo back and smashed it. You see, helping others, and giving others the highest quality of support I can is so important to me and gives me such a strong sense of self and purpose. And I’m proud to be able to do that in my role, every, single, day.

Thank you all for reading and for those who joined last Saturday, it was an honour to share the hours with you.

Lynnette x

About the author

Lynnette Ellison lives in Cambridgeshire and is proud mum to three children, Leo (12), Samson (9) and Rosie (4). Lynnette started writing her own personal blog soon after her son, Samson, was diagnosed with Duchenne muscular dystrophy in 2015. You can read her earlier blog pieces as part of her ‘Just a Mum’ writing for their family fundraising page ‘Strong for Samson for Action Duchenne‘.