Category Archives: Our Stories

Our journey of uncertainty began with the birth of our daughter Ava. She was born on March 20th, 2007 at Yale Childrens Hospital. Prior to her birth, during one of her many ultrasounds, we were told that Ava was missing the corpus callosum, which is the piece of the brain that helps the two sides [...]

We were sent directly to the hospital from what was supposed to be a 35 week routine check up. My amniotic fluid was low and I was measuring small. After 35 weeks of a normal pregnancy, Jake was born by c-section on December 24, 2003 due to low fluid and in the breach position. He [...]

My daughter was born in February of 2003, nine years after her older brother. I had been told for years that I would not be able to have more children, but I refused to give up. Three years later, my beautiful daughter was born. She was born 4 weeks early due to my development of [...]

Timmy was born in October 1993 and is now 16 years old. Although he has grown into a “Tim” or perhaps a “Timothy” we continue to call him “Timmy.” Natalie was born in November 1997, and is now 12. Both Timmy and Natalie have been diagnosed with Ullrich/Bethlem Congenital Muscular Dystrophy by Dr. Carsten Bonnemann [...]

The journey with Philip Ryan has been extraordinary. I have trouble just starting to write. I have not kept a journal but do have all of his records. He is an amazing boy. We love him so very much. He came as a little teacher for everyone who is willing to receive what he has [...]

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 [...]

Pierce was born in August 2005 in Sydney, Australia and apart from having displaced hips, Pierce appeared to be a perfectly healthy little boy. For Pierce’s Daddy and I, it was love at first sight. Our red headed little boy was placid and had a wise look about him that was noted by a number [...]

I was born on August 11, 1995 at 12:04 in the morning. Obviously I don’t remember much of the details, but I do know that I was induced two weeks early because of low amniotic fluid. Eventually at about 6 months of age, my parents started worrying about my health because I was missing milestones. [...]

I would like to share the story of Maaz who is diagnosed with merosin deficient CMD. Maaz was born in Sep 2001 in Nanjing, a city in China. He is Pakistani and lives with his parents.

Thomas (11yrs) and Sophy (6yrs) both have merosin deficient congenital muscular dystrophy. They are both walking but cannot manage stairs or long distances. Thomas rides an electric scooter at school while Sophy has a manual wheelchair for long distances. Thomas recently had spinal surgery to correct his deteriorating scoliosis. Thomas likes LEGO Bionicles while Sophy [...]