2016 Speak Now For Kids Family Advocacy Day Hero: Clare
Three days after birth, Clare began to acquire a flurry of health complications upon returning home from the hospital. From feeding tubes to ventilators, Clare was getting progressively worse. Finally when Clare was 4-months-old, she was diagnosed with nemaline myopathy, a form of muscular dystrophy that primarily affects face, neck, chest and limb muscles. Clare would not have survived long without the exceptional care she received at Cleveland Clinic Children’s. To date, Clare has had three major operations during which nine different procedures were performed. Clare counts eight different specialists as a part of her care team.
Once she was stable enough, Clare was admitted to Cleveland Clinic Children’s Rehabilitation Center where she received intensive physical, occupational, speech, music and recreational therapies, and was cared for by doctors, nurses, dietitians and respiratory therapists. Miraculously, Clare is thriving after a 7-month hospital stay. Before being transported home, Cleveland Clinic Children’s made sure her parents and primary caregivers were equipped to take care of Clare’s medical needs outside of the hospital. Clare’s progress and her parents comfort level tending to Clare’s needs can only be attributed to the world-class medical staff, early intervention efforts and intensive rehabilitation services at Cleveland Clinic Children’s.
Now 2-years-old, Clare is progressing better than any of her specialists could have predicted. She thrives on encouragement from her two biggest motivators, her older brother and sister. As she continues to grow, Clare’s charismatic, inquisitive and lovable personality is shining.