How you can help change the life of Corby eight-year-old with rare epilepsy

The mum of an eight-year-old Corby boy who suffers from a rare form of epilepsy has desperately appealed for funds to help him play with his brothers.

Filip Kowalewski has Dravet Syndrome - a severe and lifelong type of epilepsy - and is unable to ride a regular bike due to his condition which causes developmental delays and mobility and balance issues, among many other symptoms.

A special, adapted trike will allow him to go on family bike rides with his brothers and his mum, Gabriela Kowalewska, said it will "open a world of opportunities for Filip", as well as help his physical development by building strength in his legs.

She said: “Filip really wants to be able to play outside like any other child, but there are so few opportunities for him.

"If we go to the playground, the toddler equipment is much too small for him but the equipment for older children is too advanced, so he can’t join in.

"It’s heart-breaking seeing him unable to enjoy playing like everyone else.

“It’s been such a difficult journey for Filip. He was just five-months-old when he had his first seizure, which the doctors put down to ‘normal’ febrile seizures. Just three weeks later he had another which lasted over an hour. He even stopped breathing at one point. It was terrifying.

“He was diagnosed with epilepsy and we were told he’d probably grow out of it. But these seizures - sometimes lasting hours - kept happening, and we knew something was seriously wrong. After doing our own research and persevering, Filip was finally diagnosed with Dravet Syndrome when he was three-years-old.”

Dravet Syndrome is characterised by frequent and prolonged seizures, usually within the first year of a child’s life.

It can cause behavioural and developmental delays, issues with movement and balance, delayed speech and language, chronic infections, such as chest infections and tonsillitis, and sleeping difficulties.

Gabriela added: “Filip’s development slowed right down at about the age of two. He can walk, but not very well and he has a lot of problems with his legs and hips, which is why he needs to exercise them regularly and the trike would really help with that, ultimately giving him more independence as his strength improves.

“He hasn’t had what we call ‘a big seizure’ for about three years now, but he still has smaller ones and the fits have done permanent damage to his brain.

“The last 18 months have been especially hard. Lockdown had a bad effect on Filip’s mental health.

"His confidence plummeted and he’s only just getting back to the smiley, chatty Filip we know and love.

“We’d love to get out more together as a family and the trike would enable us to do that. His older brothers are very protective of him and can’t wait to take him out on bike rides with them. When he had a trial with the trike he was so upset when they had to take it away.”

Children's disability charity, Children Today Charitable Trust, has covered almost half of the cost of the trike but Filip still needs a further £885, which is why the charity has helped the family launch a fundraising appeal.

Emma Prescott, charity director at Children Today, said: “It’s clear that this adapted trike would be truly life-changing for Filip and his family. Not only would it help give him the physical boost and independence he desires, but also the freedom and fun every child experiences riding a bike.

“Every little really does go a long way, so any donation small or large could help make a little boy’s dream come true. Thank you!”

To make a donation to help Filip get his adapted trike visit https://www.childrentoday.org.uk/filipstrikeappeal/ .