Benfleet boys with rare genetic disease defying the odds

Mum Jenna Whyman, 38, and husband Steve, 40, were left “devastated” after finding out Rafferty and Sidney were diagnosed with spinal muscular atrophy type 1 at Southend Hospital on April 13, 2022 – a day after they turned one.

It is a rare progressive neuromuscular genetic disease which caused the boys, from Benfleet, to be born without a protein called survival motor neuron that makes the muscles move.

Comforting - Jenna watches over her son (Image: Jenna Whyman)

Jenna said: “We’d never heard of it before, but there were suspicions that something wasn’t right from four months.

“They were not lifting their heads and were quite floppy still. As the months went on, the boys didn’t start to stand, roll or crawl.

“But after many trips to the doctors and Southend Hospital, it was at Great Ormond Street on April 13 that they were diagnosed, and we found out about the historic life expectancy.

“Our lives just shattered.”

In May 2022, they went to Great Ormond Street Hospital, in London, where they received a new “multi-million pound” drug called Zolgensma, which gives them an artificial copy of the gene they are missing.

Superheroes - Rafferty and Sidney (Image: Jenna Whyman)

Despite any dead motor neurones unable to be revived and them being in wheelchairs for life, their intense private therapy has allowed them to make “remarkable gains, including gaining head control and sitting up”.

“There are no words, and it’s an absolute miracle to go from being told my two boys had an average life expectancy of two years to them now doing the typical things, such as nursery and playing with each other,” Jenna said.

“We’ve been through hell and back, but we always have and still do keep positive and count every single blessing.”

It comes as the couple, who have a five-year-old daughter called Marnie, were highly commended in the team of pride category at the Pride of Essex Awards on Tuesday for their £25,000 fundraising mission for the boys to attend intensive physio.

Jenna said: “We were over the moon to have been highly commended in the Pride of Essex Awards, especially after what we’ve been through.”