04/06/2024
Big news incoming! I know it's been a long time since we posted - life has been so hectic! Samson's 1-2-1 is taking on the mighty London Marathon for Muscular Dystrophy UK and we'll be sharing her page soon. For now, here's the piece I have written to accompany her page, I hope you like it x
Samson's story - by Samson's Mum
Samson was a late developer. He much preferred to be carried than to walk, tiring very quickly and always eager to get back in his buggy. He had a very particular way to get up off the floor (Gower's Manoeuvre) and was unable to keep up with his peers. Despite his struggles, he was always a chirpy, smiling, gorgeous little blond, curly-haired boy. At his 3 year check, the health visiting team referred him for blood tests 'just to rule anything out'. Immediately after the bloods were taken, I received a call from the hospital asking us to return immediately to talk through the results.
I pushed and pushed the receptionist on the phone to give me more details, and she told me his CK (Creatine Kinase) levels were extremely high (24,000). I immediately Googled what this meant and emblazoned across my screen were the words 'Muscular Dystrophy', 'wheelchair by the age of 10', 'heart and lung problems', 'life-expectancy 20', and crucially 'NO CURE'.
I realised the news was grave when the Doctor came out to the waiting room to meet us in person to deliver the news. All the signs showed that Samson had Muscular Dystrophy, a muscle-wasting condition which will effect his mobility. But they would be unable to confirm if it was Duchenne (DMD) until the genetic testing came back in 8 weeks.
But I knew, I felt it. I'd researched Duchenne and all the signs were there. That night my heart broke into pieces, our lives changed forever.
Those weeks were the longest ever. I went deep into researching the condition, looking at the worst and best case scenarios. Some boys lost their lives in early teens, with some rare cases of men living into their 40s, but mostly, the live expectancy was around 20-30 years of age.
When we finally received confirmation from the hospital that Samson did indeed have Duchenne, our hearts broke again. They broke for the life we hoped Samson would live, for the anticipated loss his elder brother Leo would experience, for the experiences we felt he wouldn't have, for a life lost to this cruel condition.
For 6 months, I battled with the grief and loss. Then eventually, with support from friends, family and other Duchenne parents, the world began to become brighter. Brighter, in fact, than it had ever been. I realised that we have two options, either wallow in pity and grief, or grasp every day and love life, making Samson's life the most 'normal' and best life he can lead.
And this has been our mantra ever since. We love hard, we laugh hard, we have high expectations of Samson to live his life in the best way he wants to. We have embraced Samson's condition as 'our Duchenne', it's not his, we own it with him. It does define our lives, but in the most positive and powerful way something so devastating can.
Have no doubt, I would take it away from him a million times over. Watching him struggle to get up, witnessing the times he misses out on doing 'normal' things a 12 year old boy would do, knowing that he can't have sleepovers at friends' houses as he can't climb the stairs. All those things are unspeakably heartbreaking. But, we change and adapt things to suit Samson's needs, we sourced him a Batec electric attachment to his manual wheelchair which means he zips around (top speed 18 mph!), we host friends and sleepovers regularly, we're adapting our house to make it accessible for him. And above all, he lives in a community which accepts him for him, our beautiful, smiley, kind, gentle, loving boy, who people meet and immediately adore.
Secondary school was a huge step for Samson. Many boys living with Duchenne need to access special schooling, but, thanks to the incredible Occupational Therapy team in Cambridgeshire, he's been able to transition to mainstream school from primary. We could not have asked for more from his school. The team at Ernulf welcomed Samson with open arms and have gone over and above for him; building a bespoke physio/wet-room for him, providing him with space in the 'Cabin' to decompress, agreeing to two sessions of physio per day, adapting their classrooms, lessons and timetable to fit with his needs, so that he can access all parts of the school freely. We are so lucky.
The greatest gift Ernulf have given Samson is his incredible 1-2-1 TA Kayleigh Neal. Kayleigh dedicates her working life to giving love and care to Samson. She is creative in her approach to helping him; finding new ways to keep him mobile, supporting him in his work and making the world more accessible to him. Kayleigh is fastidious in doing the best for Samson; following the Physiotherapist's guidance by the letter, helping him make friendships and pushing Samson when he needs encouragement.
It is an incredible feat Kayleigh is undertaking in Samson's name. We are so grateful for her in her daily working life, but this just is the icing on the cake. If you can support Kayleigh's fundraising in any way, please do so. You will be making a significant impact on everyone living with Muscular Dystrophy.
Thank you, Lynnette Ellison
******* Update - here's Kayleigh's fundraising page http://www.justgiving.com/page/kayleigh-neal-1715270363865
