'He'll always be a huge part of our lives': A dad, his son and a race to remember baby Isaac

Jason and Sarah Wilkins were first-time parents when their son Isaac was born in October 2009. Within weeks, concerns raised by a health visitor led to a diagnosis of Spinal Muscular Atrophy (SMA) – a genetic condition affecting the nerve cells that control muscle movement, causing progressive weakness. The couple were told their son would not live to see his first birthday.

They were put in touch with East Anglia's Children's Hospices (EACH) and moved to Walker Close, the charity's former Suffolk hospice, on Christmas Eve 2009. They spent ten days there over the festive period.

"Without EACH, we wouldn't have had a Christmas with Isaac," said Jason, a station manager for Suffolk Fire and Rescue who lives in Debenham with Sarah and their two sons, Theo, 15, and ten-year-old Ned. "Nothing was too much trouble, and those precious days will always be special to us."

Against the odds, Isaac was deemed well enough to go home. But his condition later deteriorated, and he died in March 2010, aged five months.

A kindness never forgotten

Looking back, Jason is struck by the sacrifice made by those who cared for his family that Christmas.

"We probably didn't appreciate it fully at the time, because of the emotion and strain we were feeling," he reflects. "However, looking back, the fact people gave up their own Christmas to be with us and cook us dinner was incredibly kind. They made a sacrifice, and we'll always be grateful."

The support EACH provided has stayed with the family ever since. "They were there for us at a time when our emotions were all over the place, giving us time and space to create treasured memories with Isaac," Jason said. "Without their support, we'd never have had that opportunity, and we'll both be eternally grateful."

Getting muddy for EACH

This summer, Jason is channelling that gratitude into action. He and Ned will take on The Piglet, Junior Hog – a two-and-a-half-mile (four-kilometre) obstacle course of tunnels, muddy water and hay bales at Wantisden Hall, near Woodbridge – on Sunday, 12 July 2026. Joining them will be Ned's teammates from Framlingham Town Youth Football Club's under-tens.

"It's been a while since we did anything to show our support and appreciation, so this feels a perfect opportunity," said Jason. "It ticks every box, giving us a chance to raise funds for EACH, heighten awareness of SMA and celebrate and remember Isaac."

The family have previously raised funds for the charity, including organising Isaac's Day – a live music event held at Isaacs on the Quay in Ipswich.

Keeping Isaac's memory alive

For Jason, fundraising is about more than money. It is about ensuring Isaac's story is never forgotten.

"He'll always be a huge part of our lives, and we want more people to know about his condition," he said. "That's why I'll always be open and honest about what happened and grab any opportunity to talk about him."

The bottom line

Isaac Wilkins lived for just five months, but his family have spent fifteen years ensuring his memory endures. In taking on The Piglet together, Jason and Ned are doing what families do best – showing up for each other, and for the people who showed up for them when it mattered most.

To sponsor Jason and Ned, visit their fundraising page. To sign up for The Piglet, Junior Hog, head to the EACH website.

This article cost us ~£34 to produce

It's free for you to read thanks to the generous support of our partners. Please support us by supporting them. Alternatively, you can directly fund more journalism like this by becoming a member for just £4.75 per month. You'll get our best content delivered straight to your inbox before anyone else, and the option to discuss our reporting with our journalists.