Not Medically Fragile
My daughter was born with a rare form of muscular dystrophy called nemaline myopathy.
She was three before we knew something was different with her. She was just a little weak, didn’t gain weight, fell a lot, and had recurrent respiratory infections. As she got older, I got smarter and found better doctors and they diagnosed her with muscular dystrophy at three years old. All was fine up until she was seven years old. She rode a bike and swam. She was a dancer and played the piano.
A rapid change
Then, when she was seven years old, she got mycoplasma pneumonia and was in a drug-induced coma for five months. When she came home, she was in an electric wheelchair, but we continued to thrive in life doing everything that she did before.
We have gone and done everything! We rode rides in Kings Island, participated in the Girl Scouts, went to high school prom and she finished and graduated high school. She swam with the dolphins in Florida and we’ve been on 2 cruises and nothing stops us and she goes wherever she wants to go with us as a family. We love her and we feel like we’ve been blessed to have her.
A fearless adventurer
She’s now 38 years old and she’s doing just fine. We’re still on the ventilator and we are still managing, but this life is good. She survived covid two times and we’re still striving! We are now just waiting for the next adventure. We don’t like anybody who ever says that she is medically fragile because she’s not. She is just a person with a disability who fights a little harder than others, but we do whatever we want to do and we enjoy every day to the fullest.
How are you or your loved one thriving with a rare disease?
Community Poll
How many diseases do you have?
Join the conversation