In two months, Abigail Valdes will be one year old.
In her short life thus far, she’s had two open-heart surgeries, spent months in the hospital, has taken in virtually all her food through a tube, and has been diagnosed with an immune deficiency. Every day, Abbie Valdes – and her parents, James and Christine – fight for her life.
And it’s been a long and difficult struggle, according to James Valdes. Between months spent in hospital rooms, battles with the state over nursing care, and an intensive schedule of physical and speech therapy, the Valdes family is tired. Yet they keep pushing on.
The months of medical care have taken a financial toll as well, which is why James’ employer, Alarm Detection Systems of Aurora, has helped organized a 5K run/walk to bring in some much-needed funds. The run is set for June 9 at 2 p.m., starting at Blackberry Trails Pavilion at Orchard Road and Route 30 in Montgomery.
The family, James Valdes said, has been struggling for some time, and though things are looking up – the state of Illinois recently came through with state-funded nursing care at the Valdes’ home – they could definitely use the help.
Abbie Valdes was born on July 20 of last year, and it only took a couple of days for her parents to realize something was wrong. She’d slowly stopped eating, was acting sluggish, and would sleep all the time. They took her to see a doctor, who sent her to Rush-Copley Medical Center in Aurora. They then bounced to Central DuPage Hospital, where Abbie was diagnosed with multiple heart defects.
She was quickly sent to Children’s Memorial Hospital in Chicago, where she had her first open-heart surgery at two weeks old. The Valdes family spent the first six months of Abbie’s life in and out of the hospital.
In addition to her heart defects, Abbie Valdes has DiGeorge Syndrome, an immune deficiency caused by a missing piece of chromosome. There are literally hundreds of possible symptoms, and Abbie’s weak heart is one of them. James Valdes said she requires constant care.
And that’s been a struggle all its own. While the Valdes family certainly qualified for state-funded nursing care – they received their approval last October – the state pays those nurses more to care for people with more serious illnesses. With the point system the state has established, Valdes said, Abbie is on the low end of the scale.
So it’s been hard to get qualified nurses to take the job of watching Abbie. Christine Valdes was away from her job from June to January, James Valdes said, and after that, the family hired a babysitter who didn’t work out. They just found a local nurse able to come to their Plano home a few weeks ago, he said.
Abbie is 11 months old, but her father said developmentally, she’s about where she should have been at six months. Because she’s been on a feeding tube since four days after her birth, she doesn’t know how to swallow, and will need therapy to learn. In fact, she needs three different types of therapy, multiple times a week.
Through all this, what has kept the Valdes family going?
“Stubbornness,” James said. “We won’t give up.”
The June 9 run/walk will include a bake sale and a raffle, James Valdes said. And they have a special item to raffle off – a baseball signed by Chicago Cubs pitcher Ryan Dempster, whose daughter also has DiGeorge Syndrome. Dempster has started a foundation to raise money for and awareness of the syndrome.
Registration for the 5K run/walk is $25. Participants will get a t-shirt. For more information or to register, email firstname.lastname@example.org, or call 630-844-5388.