Fundraiser for Waterford boy suffering with extremely rare condition 

A fundraiser has been started for 11-year-old Dylan Ryan from County Waterford who suffers with a number of serious conditions, including Vulto Van Silfhout De Vries syndrome and drug refractory epilepsy. 

Vulto Van Silfhout De Vries syndrome is a mutation of the Deaf1 gene, and there are roughly only two hundred people in the world who have the syndrome. Dylan is the only known person in Ireland with the condition.

He is also non-verbal and from the age of three and a half years old he was diagnosed with autism and drug refractory epilepsy.

Dylan’s family say that the biggest challenge he faces daily is his battle with drug refractory epilepsy. The condition means that medications don’t work effectively or don’t work at all to manage seizures, therefore leaving Dylan’s epilepsy and seizures uncontrolled.

Many different anti-epileptic medications and rescue medications have been tried and all have failed to control his daily seizures.

For the past six weeks, Dylan has been in Crumlin children's hospital, where he spends most days recovering in bed with little to no energy, inhibiting his ability to eat or drink.

Dylan’s mother Lorraine has become Dylan’s full-time carer, leaving her full-time job. His father Paul is also on a leave of absence from his employer because of Dylan’s hospital admission.

Speaking to the Waterford News & Star, Dylan’s aunt Leanne Edwards said that the condition is a "relentless battle day-in-day-out".

“It’s completely uncontrolled, extremely complex and the neurologists are baffled," she said.

Speaking on the vital fundraising efforts, Leanne added: “The most important thing right now is try find someone who specializes in drug refractory epilepsy because we need that help to try maintain his safety and well-being. Then hopefully we can find someone who has done studies on Vulto Van Silfhout De Vries syndrome because there’s no information on it.

"The fundraiser is also to financially support Dylan's family because his parents can’t go to work and they are staying in Crumlin hospital in Dublin. For those of you who have the pleasure of knowing Dylan, you will know he is the gentlest, most loving little boy."

The family has commented that they are "extremely grateful" for the help of medical professionals.

Donations can be made at https://gofund.me/8d94bd85