Twelve-year-old Aiden loves soccer, evening walks, swimming, watching movies, and eating donuts. He enjoys going to school and is the center of the universe for his mom, Danae. Aiden has also spent more hours in our hospital than he can count.
When Aiden was a baby, he was diagnosed with Hunter Syndrome, a rare genetic condition where his body can’t break down sugar molecules. Over time, the sugars build up in his body and affect many aspects of his life. Once an active and chatty toddler, today Aiden has limited mobility and uses a talker to communicate with his friends and family.
There is currently no cure for Hunter Syndrome. To help slow the progressions of his condition, Aiden and Danae spend six hours every week in our infusion center. Aiden receives a dose of enzymes—a treatment that was developed through research conducted at the Stanford School of Medicine.
Even as rare as Aiden’s condition is, he is not the first in his family with it. Sadly, Aiden’s uncle, Angel, passed away of Hunter Syndrome at 17 years old. Angel’s legacy is that during his lifetime, he participated in a clinical trial at Packard Children’s that helped develop the treatment that Aiden receives today. Danae and Aiden hope that ongoing research can give them more opportunities in the future to keep running on the beach under the warm sun and make many more precious memories.
Your support of Lucile Packard Children’s Hospital Stanford and the child health programs at the Stanford School of Medicine ensures that kids like Aiden receive extraordinary care today and that research into their conditions moves forward towards better treatments tomorrow.
“I would like to say thank you to all the researchers and donors for all the hard work you are doing to help keep the flame of hope lit for families like mine,” Danae says.
We hope to see you at Scamper on June 23 to cheer on Aiden and the rest of our 2024 Summer Scamper Patient Heroes!