Congenital heart defects, breathing problems, low-threshold immune systems, behavioral disorders and learning disabilities may all seem to be totally separate and tragic conditions facing a child, but they may all have one thing in common.
Children facing 22Q deletion syndrome suffer from a partially-deleted second chromosome, which can result in a combination of more than 120 different symptoms.
To raise funds and awareness for this condition, Nebraska Mission 22Q will have a 22Q, Music & Wine Too fundraiser on Saturday at Soaring Wings Vineyard outside of Springfield.
“Many of us didn't know what 22Q was when we had children diagnosed with it, so we want to create resources for those families,” said Brenda Dauel, Nebraska Mission 22Q president.
Dauel, of Gretna, said her family first learned of the condition shortly after her son Damon was born nearly four years ago.
“It was the same day he was having open heart surgery,” she said.
Damon was born with a congenital defect, having heart trouble only hours after he was born. While Dauel said she and her husband Aaron did not know of 22Q, medical staff recognized the heart defect as a classic marker for the deletion syndrome.
“We were lucky enough the medical people knew to run a test,” she said.
It was three days after Damon was born when he had the surgery, she said. The surgeon came out of the procedure to say it had been a success, and also to inform the Dauels of Damon's condition.
“My husband and I looked at each other and thought, 'What does that mean?'” she said. “We didn't even know where to start.”
Dauel said that for those families facing the condition, it is not something to fear but instead, something to take a proactive stance against.
Damon lives a fairly normal life, Dauel said. Most people don't even realize he has a condition.
“He's just our normal, ornery little 3-year-old,” she said.
Dauel said he has a weakened immune system and does undergo some physical, speech and occupational therapy, working both with Gretna Public Schools and Amazing Days For Little People near 168th and Harrison streets.
“They're all just great; they work with him really well,” she said.
Dauel said her family believes Damon, along with his condition, was given to them for a reason.
“We truly believe he was a gift to us, because we feel there is something greater we can do now,” she said.
Whether it's to spread awareness of the little-known syndrome, assist other young families who are new to the condition or simply being trusted with the responsibility of caring for a funny 3-year-old who loves to dance, Dauel said Damon gives the family a sense of purpose.
The fundraiser at Soaring Wings will begin at 6:30 p.m. and costs $30 per person, which includes appetizers as well as a wine and beer tasting. The fundraiser will also include a raffle, silent auction and live entertainment by Freddy Kerr.
All proceeds stay in Nebraska to help local families who are affected by 22Q as well as raise awareness with medical service providers so they may recognize the symptoms of the syndrome early on.
For more information on Mission 22Q, go online to Mission22Q.org or search for Mission 22Q on Facebook.