She remembers learning of their daughter's diagnosis and not really knowing much about it. Then, through the OFN they were matched with a family who had a son with CF. The family was a lifeline they never knew they needed. She is here to help you find resources to learn about your child's genetic diagnosis and connect you with families who may have the same genetic diagnosis, but most importantly her job is to listen. She wants you to know that every feeling you have is justified.
Megan is not an expert in genetics, a social worker, or in the medical field at all. She is just a mom, who has a daughter with a genetic disease, who loves to research and help others. It was not long ago that her family was in the position of learning that their daughter was diagnosed with Cystic Fibrosis (CF). They had no known family history, and no indication that anything was wrong during her entire pregnancy. After surgery at one day old, and NICU stay her daughter was able to come home, and now they are learning every day what makes up their new normal as parents of a child with special needs.
