Will W. - Mountain Lakes, NJ - 2023
In 2014, my wife Jenny and I adopted our son, Will, from China when he was 21 months old. He had a diagnosis of ichthyosis, a genetic skin disorder. Today, he is 10 years old.
I didn't know much about ichthyosis when we learned Will had this disease, but over the years both he and us have learned a lot about the disease how to care for him, and how to overcome some of the challenges it creates.
We have gotten better at controlling his itchiness and scaling. We have learned how to live an active, outdoor life with ichthyosis, which impedes his ability to cool himself through sweating.
Will has never let his skin condition hold him back from having an adventurous childhood. Today he is a good runner, an active hiker, and a strong rock climber. He is an amazing artist, who loves to draw Formula I, NASCAR, and Lemans Series race cars and to create sculptures of villains and monsters.
Even more importantly, having overcome his own challenges, has made Will an empathetic and caring kid who is always the first to reach out to another kid in pain or having a bad day.
Will and I are fundraising to help support research on ichthyosis and to support other kids and families confronting the challenges of this disease.
This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.