Profile for Grace O'Hara

graceaohara Volunteer

• Chapel Hill, North Carolina

Hello,
My name is Grace O'Hara. I am 16 years old and the founder of Having Faith Cures, a non profit organization (www.havingfaithcures.com). I have always had a passion for surfing and the ocean even though no one in my family knew the first thing about surfing. Surfing is my passion and I find so much joy peace and connection with God when I'm out on the water.

Four and a half years ago, I had an injury at Young Life camp that lead to countless hospital stays for weeks at a time at seven different hospitals along the east coast. After moving to North Carolina to receive treatment at Duke and UNC Children's Hospital, I was diagnosed with high CSF pressure at which point I received a spinal tap every six to eight weeks to remove excess fluid from around the brain and Juvenile Hereditary Hemochromatosis (JHH). JHH is a genetic disorder where the body absorbs too much iron from the foods I consume and stores it in organs such as the liver resulting in toxic iron overload eventually killing the liver altogether. Because I was diagnosed soon enough, I am able to do simple treatments that help keep my levels from reaching too high again. After going through all of this, I was able to connect with my cousin Ryan on a deeper level. Ryan has Cystic Fibrosis. I never understood the extend of Ryan's condition until my diagnosis. It has been really helpful for both us to have someone in the family who gets what it's like to be sick all the time.

I have always been begging Ryan and his parents to come to the beach with me so that I can teach them how to surf. I found out about the benefits surfing can have on CF patients a few days ago which lead me to your page. I am so in love with how you guys connect one of my biggest passions (surfing) with Cystic Fibrosis. I am very interested in getting involved in any and every way possible!