A Parent’s Story of Learning, Making Connections and Finding Support

Deana’s son, Raffi, was diagnosed with severe hemophilia A when he was seven months old. “He had strange bruising to the point where I thought he had broken a rib,” said Deana. “I took him to his pediatrician and they immediately referred us for more testing.

At first they were shocked. “We had never heard of hemophilia prior to our son’s diagnosis. We were very confused. Our hearts were absolutely broken,” she said. “The thought of giving him treatment via IV a few times a week was incredibly scary.

The feelings of anger and denial kicked in. Not being able to have any control over the situation weighed heavily on my heart. Knowing all of the things he would have to endure in his life broke me. I simply wanted to take this burden off of my son.”

Deana made the decision to get involved. She started by volunteering at GLHF’s annual golf tournament. Then, she participated in the annual Walk and Milwaukee’s Best Bloody fundraising events. “I wanted to contribute and educate myself,” said Deana. “I also wanted to meet other families like ours, to learn their coping mechanisms and reassure myself that my son was going to be ok.”

Deana attended GLHF’s annual Wisconsin Bleeding Disorders Conference where she connected with other families going through the same thing they are. Families from all over the state attend the conference. Deana told GLHF, “I wish we would have gone right when he was diagnosed. We connected with two families and both of those mothers have been such a great support system for me.

It’s funny how strangers don’t seem like strangers when you’re in the same unique situation. I realized I’m not alone.” She found the keynote presentation, breakout and roundtable sessions at the conference very valuable. Deana said that she and her husband were inspired by keynote speaker Tim

Ringgold’s outlook on life. (See inside story.) “We were moved, touched and emotional. I really loved his positive message and his roll with it attitude.”

The parent discussion groups were something Deana had been waiting for. “While I still wasn’t ready to share, I was definitely ready to listen and learn.” She added, “The kids had an amazing time. I knew they were safe, close to us and having a blast. And, I learned that it’s ok to not be ok. It’s extremely difficult to adjust to this new life.”