Kyra was born on April 18, 2006. She is a very happy child who loves to sing, dance, play outside, swing, go on hikes and play with her cousin. She is very bright and has a great personality. However, she was diagnosed with Merosin-Negative Congenital Muscular Dystrophy.
At 4 months old, her pediatrician noticed lack of head control (hypotonic) and had us into PT shortly after, as we started doing other tests. At 5 months, she had an MRI done on her brain and noticed lack of white brain matter. We were immediately sent to Denver Children’s Hospital for further testing. We tested for many different medical issues and finally, through a muscle biopsy at 9 months, she was diagnosed with Merosin – Negative Congenital Muscular Dystrophy.
The struggle for me didn’t stop there. As a single parent, it was very hard to accept these results. There was no sign of MD on my family side or her fathers. “How did she get this?” was a question I would keep asking myself. Also, being 3 states away from any family members was a struggle, so I had to find support elsewhere.
After Kyra’s first birthday, health issues started to arise. She was hospitalized for pneumonia eight different times from November of 2007 to April of 2008. In January of 2008, she had a G-tube placed, with no liquids or foods by mouth. She was also placed on a Bi-Pap machine to help her sleep at night and during naps.
I wouldn’t take anything back. These past two years, she has taught me so much and has opened my eyes to see the world in a different way that no one else could imagine. My dream for my daughter is to one day be able to dance to her favorite song on her own two feet. I am a firm believer my dream will be met because there will be a cure soon. With the dedicated individuals that have started CureCMD and the help of donations, we can find a cure together and give this dream to my daughter.
Congenital Muscular DystrophyA group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...