On 14th September 2025, Becky and I will be cycling 55 miles with ‘LondonToBrightonCycleRide’ to raise money for The Starfish Ward at Watford General Hospital.

For those who aren’t aware, in February 2024 Maximus (Becky and Michaels son and my nephew) was 6 months old and was rushed into hospital with episodes where he wasn’t breathing. The most terrifying situation for any parent is to find their baby not breathing and being helpless. Max was monitored in hospital overnight and sent home with medication for what the Drs believed at the time, was a severe form of reflux.

Between then and April, Maximus, Becky and Michael required paramedic help numerous times and spent countless nights on HDU (High Dependency Unit) in Starfish Ward requiring close monitoring and oxygen. Not knowing what was causing Max to stop breathing, lots of tests were carried out including MRI, EEGs, CT scans and a lumbar puncture. Thankfully, these all came back completely normal however left everyone still not knowing the cause.

In April 2024 Maximus was sent to Great Ormond Street Hospital where they carried out further tests. A couple of weeks later we finally got an answer. Max was diagnosed with Poirier-Bienvenu Neurodevelopmental Syndrome (POBINDS). This is an extremely rare neurological condition that causes, early onset epilepsy, intellectual delays and development delays. The severity of neurologic impairment is highly variable: some patients may have refractory seizures and be bedridden with no meaningful speech, whereas others may have treatment-responsive seizures and achieve normal psychomotor development. At the time of the diagnosis, there were approximately 82 confirmed cases in the world. Whilst Max doesn’t show any signs of delays, he does suffer with epilepsy and has absent seizures. Due to this he wears an oxygen monitor at night so his parents are alerted when he stops breathing. An alarm that makes our blood run cold but we couldn’t live without.

Starfish Ward is the Paediatric Ward at Watford General Hospital, providing the highest quality patient care for children of all ages with all kinds of illness. The team work long hours in difficult circumstances and always manage it with a smile on the face and without hesitation always put the child first. They have provided so much love and care for Max, Becky and Michael ensuring in the scariest of moments, they were 100% there for them doing everything possible for Max.

No one knows exactly what the future holds for Max as there is so little known about POBINDS. One thing we do know is no matter what the three of them face, they’ll get through it together with the love and support of us all and the incredible nurses and doctors at Starfish.

‘You never know how strong you are until being strong is your only choice’ - Bob Marley