‘He cannot enjoy what most children cherish’ – fundraiser for Waterford boy battling extremely rare condition

Organiser Leanne Edwards has created the campaign in aid of her "wonderful" nephew Dylan Ryan and his family, his mother Lorraine, father Paul and Dylan's big brother Josh.

"He has had to face many challenges throughout his life, which affect his and his family's lives every single day," said Leanne.

Dylan, who recently spent his 11th birthday as an inpatient at Crumlin Hospital, is non-verbal with multiple diagnoses. At the age of three Dylan was diagnosed with autism, a moderate intellectual disability, drug refractory epilepsy, and a mutation of the Deaf 1 gene – Vulto Van Silfhout De Vries syndrome – an extremely rare disorder.

Dylan is the only known person in Ireland to have Vulto Van Silfhout De Vries syndrome. There are roughly only 200 people in the world to have the syndrome.

The biggest challenge Dylan must face, day in, day out, is his battle with drug refractory epilepsy, which means medications don't work well or don't work in any way to manage seizures, therefore leaving epilepsy and seizures uncontrolled.

Dylan has tried many different anti-epileptic medications and all have failed to control his seizures. Several rescue medications that are used to stop seizures when a person is having too many, or seizures that are too long, also do not work for Dylan.

Dylan is also prescribed Epidyolex/Cannabidiol and had the VNS device, Vagus Nerve Stimulation, surgically fitted to control his seizures but to no avail. As a result of this, Dylan must endure countless hospital stays.

In 2020 Dylan was placed in an induced coma due to Status Epilepticus. Status Epilepticus is a seizure that does not stop, or countless seizures with little to no recovery time. From EEG readings when Dylan was in the induced coma, he was having upwards of ninety seizures per hour.

"Thankfully after several weeks Dylan recovered and was able to return home to his family. Unfortunately, since then Dylan's seizures have continued to worsen and take control of his life," said Leanne.

"Dylan cannot lead the life of an 11-year-old little boy. Suffering from countless seizures every day prevents Dylan from doing what most of us take for granted.

"He is not able to attend school, he cannot enjoy what most children cherish like a trip to the zoo or playground, or even the simplest of activities such as a walk on the beach. Instead, Dylan spends most days recovering in bed with little to no energy inhibiting his abilities to even eat or drink."

Dylan has spent the last two months in hospital where most time has been spent in Crumlin Hospital. He has been admitted to ICU twice, narrowly avoiding it countless other times.

"Dylan has received rescue medication nearly every single day over the last two months, and that could be four or five different medications each day to try and control his seizures," added Leanne.

"The medical professionals in Crumlin who have met Dylan so far have maximised their resources in trying to control his epilepsy. They are now communicating with consultants overseas while continuing their own research.

"All they can do is try to manage his seizures from the safety of the hospital which both University Hospital Waterford and those in Crumlin Hospital have done and we are extremely grateful for their help."

Lorraine had to become Dylan's full-time carer, leaving her full-time job to provide 24/7 care for him. Paul is also in a leave of absence from his employer due to Dylan's hospital admission, and the likelihood is that this will remain the same in the long run as Dylan needs the full support of both his parents.

"The purpose of this campaign is to engage in further research in Dylan's condition as it is so rare and complex, support Dylan to travel abroad to receive specialised treatment if necessary, and to help him live the life he deserves and to financially support him and his family in this difficult time," said Leanne.

"For those of you who have the pleasure of knowing Dylan, you will know he is the most gentlest loving little boy. Please support him to continue to grow, flourish and live life to the fullest."

Leanne provided an update on Dylan's condition on Friday, November 1. "Someone is happy to be finally home," she said. "Dylan is now home after spending months in hospital.

"Although he is no longer in the hospital we are still asking for people to continue to share Dylan's story so we can raise as much awareness and support for his journey. Thank you to everyone who has supported Dylan and his family."

So far the fundraising drive has raised over €15,600. Donations can be made at gofundme.com by searching for Dylan's Path – Paving the way for a better tomorrow.