Our family was introduced to the word ichthyosis in 2017, when Nate was born in 2017.

From that moment, as perhaps many of you have experienced, it was learning, researching and of course as mom, a lot of worrying about the future and what that could look like for him. While in the Children’s Hospital, I came across a YouTube video with other children and their families that introduced them, and their different types of ichthyosis. I vividly remember this moment, calling for my husband to come watch and upon watching, realizing that although there would be challenges, these were bright, beautiful children. We could do this!

This is also when we met a family close by with ichthyosis, who were kind enough to visit and share their experiences. And at 6 months in, we headed to Nashville for a FIRST conference. We found community.

And then five years and a lot of learning later, Nathan found sports……more specifically, hockey. A giant glass wall, a sheet of ice, and loads of equipment would separate us. (Perhaps he had planned this….)

Early on we had decided nothing would stop him, so knowingly began to research, reach out to our ichthyosis community, and local community to plan and make it happen. My husband Jon and I both took our respect in sport, he could coach, and I could be on the bench. We learned quickly that all his normal signs of overheating were not accurate on the ice. We had to train him to use his words, and train coaches on the importance of water breaks, and risks associated with overheating. The upside being there is a large layer of ice to lay on when you get hot. Dry fit clothing became a must. But the biggest lesson is our son is unstoppable, and we are just along for the ride. Determined, and resilient, Nate will push past anything to enjoy life, to play hockey, and apparently baseball this spring. And we will be right there alongside him researching, learning, educating, and of course just a little bit of worrying.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments listed 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.