WDSD 2021 Feature by News-Press 3.21.21
Thank you Michael Braun for this wonderful article! So glad you were able to stop by and celebrate World Down Syndrome Day with us :)
Click below to be taken to the full article.
"Barely six months after floating her idea of a local non-profit based on her son, Maddie Levy unveiled Myles Message as a way of spreading information about Down syndrome and helping others in like circumstance.
The young Lehigh Acres mother and her adorable son highlighted their 501c non-profit Sunday at Lakes Park in Fort Myers as part of the national observation of World Down Syndrome Day.
"We're hoping this will get people to know us," Maddie Levy said, as the gregarious 1-and-a-half year old Myles made a grab for a reporter's notebook.
Sunday was selected for the special day since it was the 21st day of the 3rd month to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.
Levy sees Myles Message as helping form a community around families with a child who has Down syndrome, change the delivery diagnosis from doctors and caregivers, provide realistic expectations of raising a child with Down syndromes and offer accurate resources.
"There's definitely people out there looking for the connection," she said, adding that the Naples area is ripe for such an expansion.
Ey'Moni Rice, 2, and Carol Livingston, right, make bubbles during World Down Syndrome Day at Lakes Park in Fort Myers on Sunday, March 21, 2021. Alex Driehaus/Naples Daily News/USA Today - FLORIDA NETWORK
Her own introduction to her son was not something she feels the mother of a child with Down syndrome should have to experience; she had no idea what trisomy meant when it was mentioned to her before the birth. She hopes creating the local nonprofit will provide resources and help for parents like her.
She has an Instagram page, Myles_Message19, with 3,000 followers, and a Facebook page, through which she is trying to build up support for the nonprofit group.
The local non-profit has developed postcards for what they call "The Imprint Project" that encourage those with Down syndrome children to reach out.
Her mother, Lisa Levy, said next on the organization's agenda is medical outreach.
"That has been virtual, so far," she said.
Sunday's event provided raffle baskets and Golisano Children's Hospital sent Dorian the Dog, a facility dog who's job is to provide a furry petting area.
Lisa Borges, 2, plays peek-a-boo with her grandma, Angela Perez, left, while her mom, Blanca Borges, holds her during World Down Syndrome Day at Lakes Park in Fort Myers on Sunday, March 21, 2021. Alex Driehaus/Naples Daily News/USA Today - FLORIDA NETWORK
What is Down syndrome?
In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.
Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21."
AGAIN, thank you so much for this incredible article! We are so happy to have such a wonderful write up to document our extra special day!