When I meet someone for the first time and tell them that my son has Down Syndrome they will sometimes reply “I’m so sorry.” It’s unfortunate that they have such a negative perception about Down Syndrome. But to tell you the truth, I can relate. Prior to giving birth to Emilio I knew no one with Down Syndrome and I knew even less about the condition. There was no prenatal diagnosis, only a doctor’s suspicion shortly after birth. Two weeks later, while Emilio was still in the NICU, the diagnosis was confirmed. During those two weeks I’m pretty sure I passed through all five stages of grief. After the diagnosis, I attempted to educate myself about Down Syndrome, but most of the books and videos only focused on the medical problems associated with the condition and which screenings are recommended at certain ages. It was down right depressing.
I’m not going to lie, the road has certainly been a little rough at times. I wish that he did not have to deal with the medical problems and learning challenges associated with Down Syndrome. However, when people get to know him they don’t see a boy with Down Syndrome, they just see Emilio. In fact, some people will tell me that he does not look or act like someone with Down Syndrome. I think that has more to do with society’s stereotype about Down Syndrome. Emilio is a charismatic, mischievous, active and funny six year old boy. He likes books, superheroes, cars, swimming and going to the beach. His favorite food is ice cream and he always eats everything on his plate. He is not much different than any other six year old boy, except that he has to work extra hard to do the things that come naturally to other kids.
We have been fortunate to have local organizations like CHOP’s Trisomy 21 program and the Montgomery County Down Syndrome Interest Group (MCDSIG). They have provided us with invaluable guidance, resources and support along the way. I couldn’t imagine what this journey would be like without them.
This year we are participating in the CHOP Buddy Walk to raise money for the Trisomy 21 program so that they can continue to conduct research and provide care for individuals with Trisomy 21. We will also be walking to celebrate Emilio and all the other Homies with the extra Chromies.
CHOP Buddy Walk® is the sole fundraiser for the Trisomy 21 Program: CHOP’s Trisomy 21 Program, which cares for more than 1,200 children and 300 adults annually, would not exist as it does today without the tremendous support of the CHOP Buddy Walk® & Family Fun Day.
The CHOP Buddy Walk® provides hope for tomorrow for children with trisomy 21, also known as Down syndrome, the most frequently occurring genetic syndrome in the United States. One in every 800 children are born with Down syndrome, and they often face an uncertain future. These children are at greater risk of developing chronic and life-threatening conditions such as heart disease, bone deformities, neurological, gastrointestinal and endocrine disorders, as well as feeding and developmental disabilities.
How Can You Help?
By donating and helping me support:
Ongoing clinical care and coordination for children and adults with Down syndrome and their families
New assessment tools to identify potential issues and intervene early
Continuing education for families, medical providers and community members
Transformational research to improve the quality — and quantity — of life for individuals with Down syndrome
With your support, babies born with Down syndrome can experience the many joys of childhood — and flourish in adulthood.