Dylan’s Path. Paving the way for a better tomorrow.

Hello everyone!

My name is Leanne. I have created this campaign in aid of my wonderful nephew Dylan Ryan and his family, Lorraine Dylan’s mother/my sister, Dylans’s father Paul and Dylan’s big brother Josh.

Dylan has just recently turned the age of eleven, it is not the first birthday he has spent as an inpatient in CHI at Crumlin hospital. He has had to face many challenges throughout his life those of which effect his and his family’s lives every single day.

Dylan is non-verbal with multiple diagnoses. From the age of three and a half years old 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 two hundred 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 he was diagnosed with in 2020. Drug refractory epilepsy 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 because of Status Epilepticus. Status Epilepticus explained in the simplest term 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.

Dylan cannot lead the life of an eleven-year-old little boy. Suffering from countless seizures everyday 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 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.

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 because of Dylan’s hospital admission, 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, to help him live the life he deserves and to financially support him and his family in this difficult time.

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.

Thank you from all our family x