What is something unique and special about your child with trisomy that you wish more people knew?

Megan was a little teacher who gently touched hearts.

We did not know anything about trisomy 18 when Megan was born 40 years ago. She was diagnosed at 2 months of age. Her young doctor had cared for only one baby who did not live long and he told us Megan was unlikely to survive to her 1st birthday. There was no internet or social media in 1985. The nursing textbook I had, described anomalies but no information about those living with trisomy 18. We did not know that Megan was unusually well for a baby with an unrepaired VSD and trisomy 18. She was 2 years old before we ever met another child at the 1st SOFT Family conference.

Megan was writing her own book and became the teacher, not only of us, but also some professionals involved in her care.

Why do you believe raising awareness about trisomy conditions is important, and how can others make a difference?

Raising awareness about trisomy conditions is necessary to improving the approach to care for parents expecting a baby with trisomy and the care options available for their infant. Your child’s story could become hope for another parent. It could also inspire care professionals to find ways to help those affected by trisomy. There is a lot of up-to-date information on the SOFT website about trisomy 18 and 13. Become a part of the SOFT family by joining membership at www.trisomy.org.

During Trisomy Awareness Month, what message would you like to share with the world about your family’s journey and the trisomy community?

Every child has value and purpose. Our beloved Megan taught us to see and appreciate things we had taken for granted with her siblings. She inspired us to do more than we ever thought possible. Best of all, she was about love.