Owen (6 years old), Aidan (10 years old), and Avery (8 years old).
It was a rainy afternoon when I went to Jennifer Carter's home to learn more about Action For Aidan. We sat at her kitchen breakfast bar sipping vanilla chamomile tea when her three excited children came bursting in. They were returning from the movie Toy Story 4.
Aidan, age 10, shared his favorite parts of the movie and the great previews for what he wants to see next. Then it was straight to the important business of wanting to plan his birthday party.
Mom explained that the birthday plans would have to wait. They were on the fly to his drum practice and, after that, heading straight to Prescott Park for his play rehearsal. As with any boy his age, this delay in plans was met with resistance. His mother’s patience and reassurances eventually prevailed, and Aidan agreed to postpone planning his birthday until later that night.
Sounds like a typical day in any average family, doesn't it? Well, in many ways it is, but Aidan has a rare genetic condition that most people don't even know about, Hunter Syndrome.
Hunter Syndrome is a genetic disorder preventing the body’s ability to process complex sugar molecules. The unprocessed molecules then build up in all cells of the body, causing progressive damage from head to toe. All organs are involved, the brain, ears, eyes, tongue, teeth, joints, heart, lungs, and many more. This build up causes progressive damage and dysfunction throughout.
According to the Mayo Clinic, “Hunter syndrome symptoms vary and range from mild to severe. Symptoms aren't present at birth, but often begin around ages 2 to 4 as the harmful molecules build up.”
Some of the early signs and symptoms of Hunter Syndrome may include:
Recurrent ear and lung infections
Large head
Hernias
Asthma
Delayed gross motor skills
Delayed dentition
Currently the average life expectancy of a child with
Hunter Syndrome is 10 to 20 years.
Aidan turns 11 on July 26th. He has the hopes, dreams and goals any boy of this age should have but he also has one other wish. More than anything else, Aidan and his family wish for a cure. Fortunately, research is closer than ever to finding one. Testing of new medications is in the works and finding a cure could be as close as 5 years!
Visit Action For Aidan for more information about Hunter Syndrome or to make a tax-deductible donation. Money donated to Action For Aidan goes straight to real-time research.
Aidan deserves many more birthdays. All kids with Hunter Syndrome do. Together we CAN make this birthday wish come true!