Solihull family on mission to raise awareness of rare form of epilepsy - The Solihull Observer

Solihull family on mission to raise awareness of rare form of epilepsy

Solihull Editorial 7th Jun, 2024   0

LIKE MOST two-year-olds Harry Degiorgio loves to pull faces, perform a silly dance and play with his sister – but unlike most toddlers Harry has had at least 50 blue light ambulance dashes and countless hospital stays.

The Solihull youngster has Dravet Syndrome, a rare, life-limiting, form of epilepsy and he sufferers prolonged seizures and balance issues, often tripping and falling over.

His parents Beth and Craig are speaking out about Harry’s condition as part of a UK-wide campaign by Dravet Syndrome UK to raise awareness of the condition to help improve diagnosis.

Harry had his first seizure when he was four months old and was diagnosed with epilepsy.

It was only later experts suspected that it might be Dravet Syndrome as his seizures became longer.

He was diagnosed with the syndrome a year later when he was 16-months-old.

Beth said: “Our world came crashing down when we got Harry’s diagnosis.

“I was told by phone while I was at work. The phone call ended without any offer of support or advice and so we were left to do our own research.”

Beth says she spent the rest of the week trying to find out what Harry’s life was going to be like and what the family were likely to expect.

She added: “One of our biggest challenges has been how unknown Dravet Syndrome is.

“When the ambulance has turned up, the paramedics have told me they’ve had to look up Dravet Syndrome on their way to us.

“We’ve also turned up at A&E and no one has heard of it. You’re dealing with an emergency and your child is in seizure and you realise that you are the expert, and not the medics, and that really is terrifying.”

Although officially a rare condition – Dravet Syndrome UK says it occurs in around 1 in every 15,000 live births and is one of the most common genetic epilepsies, as well as one of the most treatment resistant.

The condition also causes learning disability and a spectrum of associated conditions and difficulties with speech, mobility, feeding and sleep.

Beth, along with 14 family and friends, has also run 5km every day to raise vital funds for the charity.

So far, Team Harry has raised £3,340 the charity.

Beth said: “We were given a life-changing diagnosis with no support at all, but Dravet Syndrome UK literally scooped us up and from that moment, we thought ‘we’ve found our people’. I cannot put into words how much the support has benefited us as a family.

“We are so very lucky to have Harry and although there are some really hard days, he always has that little glint in his eye that gives us all that little bit of happiness we need.”

The Degiorgio family are among the 550 families helped by Dravet Syndrome UK which provide emotional, practical, and financial support.

For more or to donate click here or email [email protected].

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