Lowestoft family overwhelmed by support for 'warrior' Tommy

The battling four-year-old, from Lowestoft, has suffered hundreds of seizures and already endured more hospital appointments, scans, tests and treatments than most people would ever have in a lifetime.

Brave Tommy Gilbert, four, has been diagnosed with an extremely rare form of epilepsy - making him only the 30th person in the world with this diagnosis. Picture: The Gilbert family (Image: The Gilbert family)

But what makes his bravery even more remarkable is that less than a year-and-a-half ago Tommy was diagnosed with an extremely rare form of epilepsy - making him only "the 30th person in the world" to have this condition identified.

With daily seizures, Tommy’s mobility and communication are both affected by the condition.

He cannot walk or talk, or do the normal activities any four-year-old would be associated with.

Brave Tommy Gilbert, four, has been diagnosed with an extremely rare form of epilepsy - making him only the 30th person in the world with this diagnosis. Picture: The Gilbert family (Image: The Gilbert family)

Yet despite having been through so much in such a short amount of time, Tommy's journey is full of smiles.

His proud granddad, David Doddington, said Tommy suffered his first seizure when he was just 22-months-old and since then "he has had hundreds of seizures, numerous MRI scans and EEG's, as well as copious amounts of admissions to James Paget University Hospital" - with the epilepsy team there hailed as "fantastic".

Mr Doddington said: "Tommy has been officially diagnosed with ESES (Epilepsy status in slow wave sleep) which makes him at an extremely high risk of SUDEP (Sudden unexpected death in epilepsy)."

Brave Tommy Gilbert, four. Picture: The Gilbert family (Image: The Gilbert family)

Tommy also has global developmental delay, low muscle tone, hypermobility and in December 2022 it was found that he has a rare genetic epilepsy syndrome called CNKSR2 (Houge type syndrome).

Mr Doddington said: "It is so rare - he is officially only the 30th person in the world to have this diagnosis."

Given the severity of his seizures Tommy has to take a cocktail of epilepsy drugs, and recently he started under the neurology team at Addenbrooke's Hospital in Cambridge due to the complexity of his syndrome.

Mr Doddington said: "As Tommy is drug resistant - meaning drugs alone won't control his epilepsy - he is also on the ketogenic diet, supported by the team at Addenbrooke's along with The Daisy Garland charity."

Brave Tommy Gilbert, four, with his big brother, Teddy. Picture: The Gilbert family (Image: The Gilbert family)

Attending Warren School in Lowestoft, the family said that teacher Jenny and her team excel at helping Tommy progress in his skills and he has fantastic support from his "incredible big brother" Teddy, five.

'Overwhelmed'

With the community rallying round to support brave Tommy, last month Waveney Valley AC running club members were at the popular weekly Lowestoft Park Run to present the family with a £500 donation that will go towards vital equipment for "Tommy's future."

Waveney Valley AC members presenting the cheque to Tommy Gilbert and his family. Picture: Mick Howes (Image: Mick Howes)

Mr Doddington said: "The money raised is supplying a 'P-Pod' for Tommy to sit comfortably in at home, whilst being safe and postural supported - adding to his quality of life and allowing him to be engaged in everyday activities with his family.

Brave Tommy Gilbert, four, in his new 'P-Pod'. Picture: Mick Howes (Image: Mick Howes)

"We are overwhelmed by the support of the Waveney Valley Running Club and thank them for helping our little brave epilepsy warrior."