“Harper was born on April 14, 2016, at a low birth weight of 4 lbs 1 oz. She was a tiny, beautiful baby! But, she wasn’t interested in food, was losing weight, and her perfect little face was growing more puffy and swollen each day. It was obvious something was wrong.

On June 6, Harper was admitted to Cleveland Clinic because she had some abnormal, and alarming, lab results. Harper had abnormally high blood cortisol, very high blood pressure (even for an adult), and abnormal x-ray skeletal findings. This was the first of many hospital stays.

After extensive genetic testing and tissue testing, Harper was diagnosed with McCune Albright Syndrome/Polyostotic Fibrous Dysplasia. This includes brown skin changes/marks on the body called cafe au lait marks, bones that are fragile and fracture easily, and an endocrine system that essentially operates on overdrive. 

Following multiple surgeries to place titanium rods in both of her femurs and tibias, Harper is in weekly PT, OT, and speech therapy. Her favorite, by far, is aquatic therapy.  Harper loves the pool! While we try to be hopeful she will be back up on her feet again someday with all of the surgeries and therapies, we know that she is the most comfortable and mobile in the water. At our visit to the NIH this summer for Harper’s case study enrollment trip, we were told by experts to keep Harper in a pool 3-4x a week. We have Harper enrolled in aqua therapy through the Cleveland Clinic, but this is only once every week.

This water therapy is where Harper truly excels and feels confident and comfortable on her feet. We have reached out to ASW Cleveland for help with an aquatic therapy pool for Harper to use all year round. This will strengthen her muscles around the bone and will give Harper the best chance of mobility.

We are so grateful that you gave our story a listen, and we appreciate anything that you could do to help our little girl grow up to have the best life possible.”