Everytime a baby with Down syndrome is born in Arizona, Virginia “Gina” Johnson knows about it.
Johnson takes it upon herself to immediately start putting together a “parent support packet,” made up of books, pamphlets, chocolates, a movie and a sticker that reads “my baby has more chromosomes than yours.”
Most importantly, Johnson gets in contact with the parents — often visiting them herself — and tells them that everything will be all right.
Johnson has been running Sharing Down Syndrome, a small nonprofit organization, for 22 years now.
Sharing Down Syndrome aims to inform and empower parents of children with the condition. Johnson works from her Gilbert office — it’s located in the basement of her house — with two other part-time employees.
According to the Centers for Disease Control and Prevention, Down syndrome is a genetic abnormality that causes a baby to be born with 47 chromosomes instead of 46. The extra chromosome causes abnormalities in the development of the brain and body. The CDC says one in every 691 babies are born with some form of Down syndrome.
David, Johnson’s 29-year-old son and the fifth child of seven, has Down syndrome. It was through the experience of giving birth and raising David that Johnson decided to start her organization.
Johnson, who is from Ohio but later moved to Utah, said that when David was born premature she didn’t know a thing about Down syndrome. David was also born critically ill, and Johnson began feeling like it was her fault that her baby had been born with Down syndrome.
Johnson remembers the difficult encounters, some with medical personnel shortly after David was born, and again when she was visited by a social worker.
Johnson said the social worker gave her literature that gave her statistics that seemed negative, like the divorce rates of parents with mentally disabled children instead of informing her about the positive sides and essential things she needed to do to take care of her child.
Johnson didn’t understand it.
“Don’t discourage me before I begin,” Johnson said she thought at the time.
She does, however, remember two medical professionals she encountered that gave her a sense of hope.
One doctor told her to forget about the “perfect baby” she had in mind and to love and cherish the one in front of her. There was also a nurse who caught Johnson falling apart. The nurse, instead of trying to find the words that would comfort Johnson, stayed quiet and just hugged her. To Johnson, letting her emotions go and having someone understand was exactly what she needed.
Johnson describes childbirth as the “most wonderful feeling a person can ever feel,” but adds that no parent is ready for the news that ultimately “wrecks” that feeling.
“There’s a feeling of why me, what the future holds and if you’re capable as a parent to raise a child with Down syndrome,” Johnson said.
But that’s the genesis for her organization, and why when a child with Down syndrome is born in Arizona Johnson does what she can to visit or call the parents. As Johnson puts it, she works to get them to celebrate the child instead of feeling sad.
After Johnson and her family moved to Gilbert in 1985, she became friendly with other families that had children with Down syndrome. The families would get together on occasion, and Johnson suggested the idea of a monthly meeting. Sharing Down syndrome was born.
In the early days for Johnson, it was a one-woman job. She would get in contact with social workers who, along with families she had already visited, would spread the word about her efforts.
Up to the time she was serving about 500 families, she would hand-type address labels, cut them, glue them to the packages and send them by herself. During the beginning, she would use the money left from groceries to fund her operations. She had found her mission in life, she says.
It wasn’t until later that she was able to hire someone part-time to help out with the duties. Now, she has two part-time employees, Polly Standifird and Teresa Adair, working with the nonprofit.
Twenty-two years later the number of families Johnson has helped has risen to 3,000.
Johnson said the organization has succeeded in helping families get benefits, learn about the rights Down syndrome children have in school, and in giving a chance for parents to share their experiences with each other and raise positive awareness about Down syndrome.
The organization also hosts events for families across the Valley, including an Easter egg hunt, workshops for parents and a breakfast event with Santa. Probably the biggest event, Walk for Sharing Down Syndrome, is in its 14th year and takes place in September at Tempe Diablo Stadium. The walk gives parents and their children from across the state the chance to band together in a fun-filled atmosphere to show their support for Down syndrome. The walk also functions as a fundraiser to help get more parent support packets and be able to fund further events.
Recently, David was the best man in the wedding of a friend he’s had since kindergarten. When looking at how much her son has grown, Johnson wants other parents to feel the same pride about their kids that she has about David.
For more information on Sharing Down Syndrome, visit www.sharingds.org.
• Abel, a senior studying journalism at Walter Cronkite School of Journalism and Mass Communication, is an intern for the East Valley Tribune. Contact him at (480) 898-6514 or firstname.lastname@example.org.