Headline: Rare Disease Forces Waterford Boy, Dylan Ryan, to Battle Seizures and Inaccessibility to School
Dylan Ryan, an 11-year-old boy from Waterford, Ireland, is facing tremendous challenges as he navigates life with Vulto Van Silfhout De Vries syndrome, a rare disorder that has rendered him the only known patient in Ireland. Despite his bravery, Dylan’s journey is fraught with difficulties that have significantly impacted his young life, including being unable to attend school due to severe seizures.
A Unique and Life-Altering Diagnosis
Diagnosed at just three and a half years old, Dylan’s medical journey took a complex turn as he faced numerous health challenges. Alongside autism, a moderate intellectual disability, and drug-refractory epilepsy, he also carries a mutation of the Deaf 1 gene, making his condition exceedingly rare—only around 200 people worldwide have been identified with Vulto Van syndrome.
His aunt, Leanne, candidly shared insights into Dylan’s struggles, saying, “The biggest challenge Dylan must face day-in and day-out is his battle with drug-refractory epilepsy. This means that the medications prescribed to him do not adequately control his seizures, leaving them largely unmanaged.”
Seizures that Disrupt Normalcy
Since his 2020 epilepsy diagnosis, Dylan has tried various anti-epileptic medications, all of which have ultimately failed to provide relief. Rescue medications meant to stop prolonged seizures have similarly proven ineffective.
“Dylan is also prescribed Epidyolex/Cannabidiol and has had a Vagus Nerve Stimulation device surgically implanted, yet he still suffers from countless seizures each day,” Leanne explained. This ongoing struggle resulted in a traumatic event in 2020 when Dylan had to be placed in an induced coma due to Status Epilepticus, a condition where seizures last excessively long or occur one after another with minimal recovery time. His EEG readings showed alarming results—upwards of 90 seizures per hour during his coma.
After several weeks of intensive care, Dylan returned home; however, his condition has continued to deteriorate, preventing him from living a carefree life typical of most children his age.
A Life Divided by Hospital Stays
At 11, Dylan finds himself unable to participate in enjoyable childhood experiences such as school, playground outings, or simple beach walks. Instead, he spends his days in bed, often depleted of energy and facing difficulties that most people cannot comprehend.
Dylan’s frequent hospitalizations continued through October, culminating in two stays in the Intensive Care Unit (ICU). While he was released recently, his journey remains marked by nearly daily doses of rescue medication, with his hospital visits escalating in frequency and urgency. The medical staff at Crumlin Children’s Hospital are currently collaborating with consultants both domestically and internationally to seek innovative solutions for managing Dylan’s condition.
A Family’s Lifelong Commitment
The emotional and physical toll of caring for Dylan rests heavily upon his family. His mother, Lorraine, has left her full-time job to become Dylan’s full-time caregiver, while his father, Paul, is also taking a leave of absence to assist during Dylan’s ongoing treatment.
Leanne implores the community to understand the gravity of Dylan’s circumstances. “My aim is to make people aware of just how complicated and difficult it is to live as Dylan and his family do every day. He has lived a thousand lives with all he has had to endure and how cruel that just is.”
Rallying for Research and Support
In light of these challenges, Leanne and the family are advocating for further research into Vulto Van syndrome. Their aim is to pursue specialized international treatment that can provide Dylan with the quality of life he deserves. “We want to support Dylan so he can continue to grow, flourish, and live life to the fullest,” she said.
The family has initiated a crowdfunding campaign named Dylan’s Path to gather financial support for both research and to aid in the intense medical needs of Dylan’s family.
A Call for Support
For anyone touched by Dylan’s story, the family encourages you to support their efforts to help him reclaim his childhood. “Please support him to continue to grow, flourish and live life to the fullest,” said Leanne.
Your contributions can aid in enhancing research into this rare condition and help provide Dylan with the care that can make a meaningful difference.
Explore how you can get involved and make a change for Dylan—donations can be made through the Dylan’s Path campaign. Share your thoughts, experiences, or spread the word in the comments below. Your engagement could help not just Dylan but also raise awareness of rare diseases that often go unnoticed.
