What we're doing:

Despite being delayed due to injuries and the pandemic, Charlotte and Rhi will be running the Essar Chester Half Marathon on 19th September AND the MBNA Chester Marathon on 3rd October 2021!

Why we're doing it- Elsie’s story by Mum: 

Elsie was born in October 2017 with an extremely rare genetic Syndrome called Smith-Lemli-Opitz Syndrome or SLOS for short. SLOS means that Elsie is unable to make enough Cholesterol for normal physical and mental development, which sadly means that Elsie suffers with a lot of symptoms ranging from limited vision and hearing, frequent vomiting relating to Gastro difficulties, no suck reflex or ability to eat orally meaning she is fed all of her nutrients via a jejunostomy. Whilst Elsie has lots more symptoms as a result of her Syndrome, she is the happiest, sweetest and most inspirational little girl I’ve ever met.

We were told not to expect much from our little girl and that she would never walk, talk or eat anything orally. You immediately think the worse, you believe that your child will never move, will never make a sound, will just lie in the same position day in day out. But Elsie has different ideas! Elsie has recently turned 2 and is flourishing. She makes lots of different sounds, she’s tasting and showing an interest in foods, she engages with people familiar to her, she laughs, she gets annoyed, she knows what she likes and dislikes and how to communicate this. She moves (non-stop), she kicks, she rolls, she plays and she is now learning to sit!

I believe Elsie’s progress in testament not only to the amazing support we’ve had from the SLOS Foundation in the USA, but also due to all of the therapy she engages in here. Whilst she has an amazing physiotherapist through the NHS of whom she see’s weekly, Stick ‘n’ Step have been pivotal in promoting Elsie to be as independent and confident as she can be. Elsie enjoys her weekly sessions and is learning and developing all of the time. 

Stick ‘n’ Step haven’t only supported Elsie in achieving many milestones, they’ve also supported us as a family at a very difficult and emotional time in our lives. The families we have met through accessing Stick ‘n’ Step have been invaluable, their knowledge, their support, their understanding helps us to get through the hard days. The staff are equally as crucial in terms of the support they offer to families like us. When we arrive at the centre, we are always welcomed warmly, it feels like we are visiting family.

More about Stick ‘n’ Step:

“Here at Stick 'n' Step we believe in doing one thing and doing it well. And our one thing is supporting children and young people with cerebral palsy and their families.

​We offer free weekly conductive education group sessions to children and young people from across the North West. Delivered from our specialised centres in Wallasey and Runcorn, the sessions are designed to help each child to reach their personal potential in terms of their confidence, mobility and independence.”

For more information, please visit the Stick ‘n’ Step website.