Hi Everyone,

I am your typical couch potato, but I have been inspired to challenge myself by two incredible boys who continue to defy odds. In an effort to raise money, I'm running the Great North Run for my cousin's two resilient boys, Raffy and Siddy. Raffy and Siddy are identical twin boys from Essex who were diagnosed with Spinal Muscular Atrophy type 1 (SMA 1) shortly after their first birthday. This rare, progressive neuromuscular genetic disease affects every muscle in their bodies, making it impossible for them to crawl, stand, walk, or make independent movements like sitting up.

It’s a heartbreaking reality that, without treatment, SMA 1 is fatal before the age of 2.

Despite the challenges they face, Raffy and Siddy are the most mischievous, cheeky duo, full of life and spirit. They’re determined to reach their full potential and lead as independent a life as possible, but to do that, they need ongoing physiotherapy, hydrotherapy, specialized equipment, and home adaptations that are beyond what the NHS can provide.

Their parents have shared a breakdown of how your donations will be used to help these brave boys:

Private orthotics: They urgently need advanced back braces to prevent their scoliosis from worsening. These cost £2,500 each and need to be reviewed every six months.

Private physio: Weekly sessions cost £8,320 per year.Private hydrotherapy: Weekly sessions cost £7,280 per year.

House adaptations: As Raffy and Siddy grow, they will need a wheelchair-accessible bedroom and wet room, estimated to cost around £80,000.

Intensive therapy: Specialized programs like Swim Lab and Napa Centre can cost up to £4,500 per child for intensive therapy weeks.

Vehicle adaptations: To accommodate their wheelchairs, the family needs to adapt their vehicle, which requires a £10,000 deposit.

Equipment: Their next wheelchairs will cost £2,500 each.

Their journey to a diagnosis was long and difficult. Their parents knew something was wrong when the boys weren’t meeting typical milestones like holding their heads up or sitting unaided. After months of being dismissed by medical professionals, their mum finally found a GP who took her concerns seriously, leading to a genetic test that confirmed SMA 1.

The boys are now under the care of Great Ormond Street Hospital, where they’ve received Gene Therapy using a groundbreaking drug called Zolgensma. This treatment means that Raffy and Siddy’s condition is no longer terminal, but it’s not a cure. Zolgensma has given them a second chance, but they still face significant challenges, including lifelong mobility issues. The boys will require intensive therapy to maximize their potential, and that’s where we come in.

Raffy and Siddy’s parents are deeply grateful for the care and treatment they’ve received, but they know that Zolgensma alone isn’t enough. As their parents put it, Zolgensma without physiotherapy is like a “gun without bullets.” The boys need continuous support to strengthen their muscles and achieve what was once thought impossible for children with SMA 1.

By donating, you’re not just giving money—you’re giving Raffy and Siddy the chance to reach new milestones, like rolling, sitting, and standing, which are unheard of for SMA 1 but possible with intensive physiotherapy. Even the smallest contribution will help them on their journey toward independence.

If you’re unable to donate, please consider sharing this story far and wide. The more people who hear about Raffy and Siddy, the closer we’ll get to our goal. These boys are warriors, and with your help, they’ll continue to fight and thrive.Thank you for your support. Let’s give Raffy and Siddy the best chance to achieve their dreams.