Posted at 5:01 PM

Haley Dostalik

Haley is a beautiful, energetic, happy 3½ year-old girl who was diagnosed last year with Marfan syndrome. We all marveled at her long fingers and toes after she was born and how tall she seemed to be in comparison to everyone else in our family. Little did we know these were telltale signs of a disorder known as Marfan syndrome.

When Haley was 1½, we noticed that her feet were extremely flat and that she was beginning to walk on the inside of her feet. A local orthopedic specialist diagnosed her problem as flexible flat feet and recommended we come back in a year unless things got worse. About six months later we returned and were referred to another orthopedic specialist. He noticed how hyper-mobile Haley was (we call her Gumby) and suggested we see a genetic specialist. Thanks to his keen observation, the genetic specialist ordered an echocardiogram and full eye exam and we discovered that our daughter has an enlarged aorta and mitral valve prolapse. Today Haley is on Beta Blockers and is doing terrific. She has started to show signs of scoliosis, but her prognosis remains great.

We encourage all parents to follow their instincts when it comes to their children. If something doesn’t seem right, it probably isn’t. If we hadn’t been proactive with Haley’s extremely flat feet, we never would have known that her heart was a ticking time bomb waiting to go off.

We feel extremely blessed to have such a special daughter and cherish every day with her. We look forward to sharing many wonderful experiences with her in the years to come.

Kari & Marty Dostalik