Signs & Symptoms
At 5½ months, we first found out that Romy had a cardiomyopathy and her global development started to be late. ERT and physiotherapy started at 6½ months. She started walking at 18 months and her heart came back to normal before her third birthday! She worked a lot for every milestone! Right now, at 7, she can’t follow her friends in sports but she does everything she can and never stops trying. She needs speech therapy and physiotherapy and has a hear loss. We are investigating to know if she has swallowing issues and probably gastric reflux. She had to be immunosuppressed 3 times because she was developing antibodies against her ERT.
Romy is a 7 year old girl who loves music, dance and singing. She also enjoys practicing every type of art. She has a little brother and takes care of him like a little mother (sometimes too much haha).
Romy is very cared for by our family and friends and we are very thankful to be surrounded by so much support.
Symptoms started at 5½ months
Diagnosed at 6 months
“We want our child to be able to live the life she wants.”