Sisters take on London to Brighton cycle for Watford Starfish children’s ward
They'll also be raising awareness of rare diseases, of which one sister's son lives with
Two sisters are preparing to cycle from London to Brighton this September in support of the Starfish children’s ward at Watford General Hospital, where two-year-old Maximus Law receives ongoing care.
Sophie and Becky Law will ride the 55-mile route to raise funds for West Herts Hospitals Charity and to shine a light on Poirier-Bienvenu Neurodevelopmental Syndrome (POBINDS), a rare genetic condition that affects Becky’s son Max.
Max first became unwell as a baby. At just five and a half months old, he was rushed to hospital after turning blue and struggling to breathe.
“We were in and out of hospital pretty much every day for about two months,” Becky said.
After further tests at Great Ormond Street Hospital, he was diagnosed with POBINDS, a condition linked to early-onset epilepsy as well as intellectual and developmental delays.
At the time of his diagnosis, Max was only the 82nd known case worldwide and the fourth in the UK.
For the family, the rarity of the condition has made awareness-raising just as important as fundraising.
“The big thing for us is it’s made us wonder how many people have epilepsy but potentially have an underlying condition,” Becky said. “Knowing that and having a bit more information means children can get the right support in place.”
Sophie, who suggested the cycling challenge, said she was inspired by seeing her sister and brother-in-law cope with Max’s hospital admissions. “I just saw how Becca and Michael were dealing with it,” she said. “If they can somehow put on a brave face every day and still see Max as this happy child, then this is something I can do.”
The sisters have been steadily increasing their training distances, recently completing 30-mile rides together. “It’s good that we’re doing it together,” Becky said. “We just keep pushing each other.”
Their efforts have already attracted strong support. The sisters set an initial fundraising target of £500, which was met within 18 hours. Donations now total more than £1,600, with hopes of reaching £3,000.
Becky explained that any money raised will go towards enhancing the environment for patients and families on Starfish Ward, suggesting that a quiet parents’ room would make a real difference.
“We trust the ward to make the best decision with the money,” she said.
The care Max has received on Starfish Ward has left a lasting impression. Becky described the staff as “amazing” and recalled how a nurse remembered how she liked her tea on a difficult night in hospital.
“These people do such an amazing job with very little support sometimes,” she said. “This is the least we could do.”
Dr Vanita Rasiah, Consultant Paediatrician with epilepsy interest at Watford General, praised the sisters’ efforts: “POBINDS is a very rare neurodevelopmental condition that many have never heard of. By sharing Max’s story, Sophie and Becky are helping to raise awareness and support for families affected by rare conditions.”
Alison Rosen, Chief Executive of West Herts Hospitals Charity, added: “Their determination and love for Max truly embody what our charity is about – going above and beyond for patients and families.”
A fundraising page has been set up ahead of the challenge.