If Aidan Smith could watch “SpongeBob SquarePants,” play with his Hot Wheels® cars, and spend time with his older siblings Blake and Katelyn all day, he would.
But some days, the fun and caring 9-year-old must focus on bigger things.
At age 6, Aidan was diagnosed in Omaha with Juvenile Huntington disease, or JHD, a progressive, terminal neurological disease that affects physical, emotional, and cognitive capabilities.
Shortly after his diagnosis, Aidan’s mother, Denise Hudgell, contacted University of Iowa Stead Family Children’s Hospital to see what resources were available for her son.
The University of Iowa is one of just 21 Huntington’s Disease Society of America Centers of Excellence nationwide. The center brings together clinical services, education, and research opportunities to provide patients with access to the most advanced treatment options.
“The clinicians have a very good working knowledge of how the disease progresses,” says Denise. “It’s important to go to a place like the University of Iowa that is a center of excellence in Juvenile Huntington’s disease because I feel that those are the best ones to take care of us.”
JHD affects Aidan in many ways. His muscles contract and become rigid, for example, so he has a hard time walking and sitting still. He also has difficulties talking, swallowing, sleeping, and learning, and has a seizure disorder.
Since his first visit in August 2012, Aidan has been participating in a UI study—the only one of its kind in the world—that uses MRI images to track the JHD progression in his brain structure and function over time.
Aidan’s family hopes that being part of the study will help not only Aidan, but other children and families dealing with JHD as well.
“Even though it’s rare, we have kids that need hope and parents that need hope for a cure for our children,” says Denise. “Juvenile Huntington’s is a devastating disease, so any research that can help even some of his symptoms would be wonderful, so I’m very thankful for the research that’s done at the University of Iowa.”
When Aidan comes to UI Stead Family Children’s Hospital, he completes tests and play therapy with researchers as part of the study. Afterward, Aidan’s family meets with his psychiatrist, neurologist, and neuropsychologist to address any needs he may have.
Denise is grateful for the dedication and compassion of her son’s care team, which includes a social worker who traveled nearly four hours to explain JHD to Aidan’s classmates and teachers.
“You can tell they have a passion to help our Juvenile Huntington’s kids, and that, to me, is very important,” says Denise. “We need those people who have a passion to work with our children.”
Aidan, a social butterfly with a contagious laugh, makes a lasting impact on everyone he meets.
“Aidan has taught me what it means to be brave,” says Denise. “He has seen and done a lot of things that a lot of adults couldn’t handle. He’s taught me unconditional love and how to take each day and live it to the fullest.”
In memory of Aidan Smith
September 19, 2005 to March 7, 2018