3-year-old Sidney was diagnosed with type 1 Spinal Muscular Atrophy (SMA). Through the support of InXpress Gives Back, we’re helping to fundraise for this vital charity.
The Cooke family’s world was turned upside down when Sidney was diagnosed with type 1 SMA. At just four months old, they noticed subtle signs something wasn’t quite right. Despite numerous doctor visits, the intangible symptoms of SMA, including difficulty swallowing, sucking, and not meeting milestones like holding his head up or sitting, had left doctors baffled, and mum and dad desperate for an answer. But, it wasn’t until they took matters into their own hands, the answer stared them square in the face, and SMA: a muscle-wasting disease, became their new reality, turning their lives upside-down. Now was the time to fight for their son’s life.
SMA affects one in 16,230 babies born in England and historical studies show that before the availability of treatment, fewer than one in ten (8%) survived to the age of 20 months without permanent ventilatory support.
Many challenges lay ahead, but with the support of family, friends, and organisations like InXpress Gives Back, the family rediscovered newfound strength to persevere. Everyday matters, as does fundraising for vital equipment and physiotherapy for Sidney, which has become the family’s number one priority. Whereas, previously SMA was a death sentence, with a maximum two years and no treatment available, today, it’s a very different landscape for children like three-year-old Sidney. There are new treatments available – though not in the UK – along with specialist equipment (like a spinal brace) and physiotherapy at NAPA twice a week, to give Sidney a fighting chance for life. “Sid seems to be improving; he’s now able to stand with help!”
As you can imagine, the financial burden really is immense. Which is why InXpress Gives Back were honoured to lighten the load for a month, enabling Sidney’s family to focus on enjoying moments with him. But, Sidney is a special little boy, who’s impacting the hearts of those who come to know him, which is why InXpress Chelmsford franchisee, John Wall, is doing more through his business. “We just raised further money with a race night recently for him to be able to get a new leg and back brace.”
To know more about SMA, or about also helping Sidney, visit the Tree of Hope website.
