“My youngest son, Winter, two, is funny, cheeky, and fearless – absolutely nothing phases him. He loves music and is hilarious!

Early last year, Winter started having seizures and he was diagnosed with epilepsy in February. A few months passed, and in May, he started having around five seizures a day. The number of seizures he was rapidly increasing, and it reached a point where Winter was having 56 in a day. We took him to A&E at St. Peter’s Hospital and he was monitored around the clock for five weeks.

We were transferred to St. George’s Hospital in London where Winter was put in ICU under sedation. An MRI scan found an abnormality on part of Winter’s brain, which was pushing against his skull. We were then taken to Great Ormond Street Hospital (GOSH) where Winter had to undergo major surgery to disconnect the frontal lobe of his brain as he was in a state of epilepticus (where seizures are longer than five minutes or if you have more than one seizure without returning to a normal state of consciousness between episodes.)

Winter’s surgery lasted eight hours and it was the scariest time for us. When he was recovering, he was completely vacant – he didn’t communicate and started having post-surgery tremors. We had to stay in GOSH for three weeks until Winter was well enough to come home, and we go back for monthly check-ups.

We administer daily medication to Winter at home, via an NG tube. He is slowly coming off his medication, but everything is still bit unknown – we don’t know if the surgery has fully worked, or if another operation will be needed.

My eldest son, Noah, is six and very clever – he understands Winter’s condition and has taken everything on the chin. My family have been brilliant and have rallied around us.

We were introduced to Momentum at St. Peter’s Hospital and our Family Support Worker, Sam, regularly checks in to see how we are doing.

We have been on Momentum’s riverboat – Noah absolutely it– we stayed overnight, and the volunteers taught him a lot about operating the boat on the river. We stayed in the cabin not long after Winter’s surgery – it was great and just what we needed.

Hana, Momentum’s Social Worker, helped us complete our DLA form. She was brilliant, explaining everything in detail. Without Hana’s support, I don’t think we would’ve completed the form – it was a huge task, and we just didn’t have the head space for it.

After everything Momentum has done for us, we knew we wanted to do something to say thank you. Sometimes smaller charities like Momentum get forgotten about, but what they do for families is amazing and so personal. I saw the Winter Walk advertised on Momentum’s website, and because our son is called Winter it was the perfect event to sign up to! There are 12 of us taking on the challenge and we are really looking forward to it. I am going to the gym regularly and am also doing some longer walks to prepare myself for the challenge.”

Claire and her team are hoping to raise an incredible £7,000 for Momentum by taking on the London Winter Walk. Help them reach their fundraising target by sponsoring them here