Ichthyosis Awareness: Mark and Hunter's story. "It’s not what you are dealt, but how you deal with what you’ve been dealt."

I've admired Hunter Steinitz for a long time. She's a fantastic role model for young people with Ichthyosis. I'd love to meet her one day. In recent months, I've come to know her Dad, Mark. I love their close relationship, it reminds me of my Dad and I. I asked Mark to tell his and Hunter's story, and I'm so happy he and Hunter agreed.

Meet Mark and Hunter.

"My name is Mark Steinitz. I have a 19 year old daughter named Hunter who is beginning her sophomore year at Westminster College. Like other college students, she isn’t quite sure what her life’s work will be, but has begun her studies as a double major in religion and theater. Not necessarily unusual on its face, however Hunter has Harlequin Ichthyosis, which makes it somewhat unlikely.

As a carefree 39 year old guy, I was thrilled to learn that I was going to be a dad. Patti and I chose to marry and live the family life that we were both familiar with. We could not have known that we were both carriers of a recessive gene. Our combined genetics brought Hunter into this world in the 35th week of pregnancy with a rare skin disorder. Within hours of her birth Patti and I had to consider a do not resuscitate order and quickly arrange for a baptism in the neonatal intensive care unit that we casually toured just weeks before. This wasn’t what I signed up for.

While the folks at Magee-Womens Hospital here in Pittsburgh, Pennsylvania took care of Hunter, at home, Patti and I held each other. I remember sitting on the living room floor with our 10 year old daughter Dana. Comforting each other, we committed to do whatever we need to do to move forward. "One day at a time" became our determined creed.

Hunter beat the odds in those very uncertain early days. The initial milestone on this journey we found ourselves on was the lifting of the order to not resuscitate. After a stay at Transitional Infant Care Center, where we learned how to take care of her, she came home. Unlike today, information about what came next moved at a snail’s pace. Our dermatologist learned of a support group, and Patti went to work. That group, FIRST, the Foundation for Ichthyosis and Related Skin Types became our lifeline. Six months later, leaving Hunter at home, we attended a FIRST Family Conference in San Diego, California.

Families from FIRST provided some best practices to follow. Turning every stare or comment into an opportunity to educate, Patti was determined that Hunter’s education would be a mainstream one from pre-school forward. There were many challenges along the way. The tools we came to know and use, IEP’s, the 504 (editor's note: disability action plans at American schools), up front discussions with teachers and administrators all enabled us to meet each new issue. Every experience along the way put Patti in the position to help other families as we had been helped. Unselfishly she grasped every opportunity. With graduation from high school within sight, good fortune turned on us and we lost Patti to pancreatic cancer in 2011.

Our advice to each other, never give up. It’s not what you are dealt, but how you deal with what you’ve been dealt. Our recovery is ongoing. I’m extremely proud of how Hunter navigated the remainder of her high school days in spite of our loss. She was awarded The Amelia Earhart Scholarship presented by the Zonta Club of Pittsburgh.

"The most difficult thing is the decision to act. The rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward."

- Amelia Earhart.

Hunter has become the voice her mother no longer has. She most recently appeared as a guest on the Katie Couric Show to inspire others, promote FIRST and Westminster College.

We attended the FIRST Family Conference in Indianapolis to once again give back, and upon learning of a family with a newly adopted child with Harlequin Ichthyosis it was her mission to visit them and share her wisdom. I can’t wait to see what comes next."

Watch Hunter on the Katie Couric Show.