Aidan was born in April 2009. We were so thankful that he arrived safely and healthy. Aidan was 7 lbs 14oz — much smaller than his brother Craig who was 9lbs 2oz when he was born in 2003. The first 2 months while on maternity leave, I cherished the days I had with Aidan. Craig was in kindergarten for about three hours and I was happy to have that time to spend with Aidan.
At the age of 2 months, I took Aidan for his 2 month check up, excited to reach the next level in his development. We mark this day as ‘The day our lives changed forever’. We learned at that appointment that Aidan was not developing as he should. The pediatrician noticed that Aidan was not holding his head up and his arm strength was weak due to low muscle tone. The pediatrician recommended we see a neurologist who realized something was not right and that we should seek a second opinion.
Aidan had an MRI at Lehigh Valley Hospital where they noticed the white matter was abnormal. Aidan was then sent by ambulance to the Children’s Hospital of Philadelphia (CHOP). At first, the doctors thought it would be a metabolic issue that could be improved by a diet change, but his low tone indicated that it was more of a muscular issue. Dr. Bonnemann studied Aidan’s MRI and believed it to be Congenital Muscular Dystrophy (CMD), Merosin Deficiency. Aidan had a muscle biopsy that confirmed it was CMD Merosin deficiency. This news devastated us. All I could think about was Aidan’s future and the difficulty he would face in his daily living.
Aidan has occupational and physical therapy once a week at home and is handling that well. His muscles are staying flexible. However, his shoulder muscles have very little muscle tone and his ankles are slightly tight so he will be fitted with orthopedic shoes at our next visit to CHOP.
The delay in Aidan’s development is becoming more noticeable. The good news is that his cognitive skills seem to be good, as he smiles and laughs. If you do “raspberries” at him he will do them right back at you. He sleeps okay, not the best at taking naps, and his breathing is fine. He is now eating rice cereal and fruit and loves it.
We have connected with the Muscular Dystrophy Association, Lehigh Valley and have completed one fundraiser. We have created Aidan’s Team and will walk in the “Stride and Ride” in November and will work on the MDA Black & Blue Ball.
I only want Aidan to have the best life that he can!
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...