At our 20 week anatomy ultrasound, we found out that our first daughter had Trisomy 18. Three 18th Chromosomes in every cell of her body. 90% of pregnancies with Trisomy 18 end in termination. Of those that are carried through, 75% will not make it to a live birth. 21 days is the average life span for a child born alive with Trisomy 18, and less than 10% will make it to their first birthday. These numbers are terrifying.
When Evelyn made it to her first birthday, we knew this was a huge milestone not just for our family, but for the special needs community. My husband and I shared our dreams and we were both on the same page, we wanted to start an organization in honor of Evelyn.
We founded and started, Evelyn’s Treehouse. The first several months after Evelyn was born were some of the hardest and loneliest days of our life. We didn’t know where to start, what resources were available to us, or if we’d be able to take care of Evelyn on our own. As we spoke with families of children with special needs, this feeling is normal. On average, it takes a parent about 5 months of caring for their medically complex child to feel that they have a grasp on what they’re doing.
We want to help. And we need your help, to help. Evelyn’s Treehouse will start in INOVA Children’s Hospital in Fall’s Church, Virginia. We will offer resource bags to families with our story inside. We are also working with the community to provide pamphlets and information on resources and assistance available for these families once they transition home from the hospital.
We want every family to see the joy in having a child with special needs, not the fear of the unknown. With your help, we will make these bags available so that no family will come into this role thinking they’re alone.