'Our Little Hero'
“Aidan’s favourite bedtime story starts with a little hero on an adventure, much like his own journey. It’s a story filled with courage, love, and a special kind of magic that resides in the hearts of those brave enough to face great challenges.”
We are Jessica and Matthew, proud parents of our remarkable boy, Aidan. Aidan is on a unique path, battling not mythical creatures, but a real and challenging condition — a rare genetic disease called Kabuki Syndrome.
Our lives took an unexpected turn right from the start. Aidan’s struggles after birth brought us to Glasgow Children's Hospital's paediatric intensive care unit (PICU). At just three weeks old, he went into heart failure, a moment that changed everything and catapulted us into a blur of medical emergencies and life-saving surgeries.
The days were long, and the hospital became our second home. The nights were even longer, as it was not possible for parents to stay the night in PICU. Despite being physically apart from Aidan, Glasgow Children's Hospital Charity kept us connected through vCreate, a digital platform that allowed Aidan’s team to share photos and updates, making each moment away a bit easier to bear.
Glasgow Children's Hospital Charity equipped the PICU with large, recliner chairs, which we were offered when Aidan was stable enough to be removed from his bed and placed on our laps while we sat. We cherished those moments – they gave us the opportunity to breathe his scent, hold his tiny hands and make the connection with our newborn we so deeply longed for.
There were times when Aidan was so unwell, that even though overnight accommodations were not available, the team offered us a nearby family room, filled with artwork furnished by Glasgow Children's Hospital Charity, making our stay as calming as possible.
The charity’s impact didn’t just touch the softer side of Aidan’s stay, it literally provided essential, life saving equipment like new ventilators, which we witnessed first-hand when Aidan’s was replaced during his stay.
Six weeks later, discharge day finally came but our journey didn’t end. Aidan had another heart surgery and two hip operations upcoming. He requires ongoing care from an interdisciplinary team, encompassing immunology, endocrinology, audiology, hepatology, orthopaedics, cardiology, gastroenterology, ENT, audiology and more.
With Matthew’s background in genetics, we knew there was a connecting thread among Aidan’s symptoms. His persistence and the genetics team’s dedication led us to uncover Aidan’s diagnosis of Kabuki Syndrome. Glasgow Children's Hospital Charity has been with us every step of the way, supporting Aidan’s continued care and treatment whilst making every hospital visit – which is about one per month - as pleasant as possible for Aidan.
Now, at two-and-a-half years old, Aidan is thriving. Our mission as his parents has expanded to raising awareness about Kabuki Syndrome, and we actively work with the Kabuki Syndrome Foundation to support research and find treatments.
Glasgow Children's Hospital Charity stands as a beacon of hope for families in their toughest times. They provide not only vital medical equipment but also moments of joy, comfort, and strength.
By donating, you’re not just aiding a child; you’re supporting a battle against overwhelming odds. You offer families like ours hope, the power to keep going, and the belief in happy endings.