Defying the Odds

The chilly evening of January 18, 2010 will forever be burned into Jason’s memory.

Within a matter of hours, Jason saw his world crumble around him as doctors told him chances were high that both his wife, Hope, of 11 years and his newborn daughter, Claire, would not survive the night.

It all happened so quickly. What started as difficulty breathing for Hope spiraled into an ambulance call. On the stretcher, Hope gripped her husband’s hand and pleaded, “Don’t let me or my baby die.” Hope fell unconscious and Claire was born, not breathing. After 30 minutes of resuscitation, Claire finally took her first breath. But things were just getting started for this new family of three.

Eventually, it came to light that Hope had peripartum cardiomyopathy, a rare disorder that can trigger heart failure in pregnant women, a condition she had no sign of having throughout her 36-week pregnancy. Eventually, Claire’s diagnosis came to light as well. Due to the lack of oxygen to her brain, Claire had cerebral palsy.

Hope and Jason learned there were only two centers in St. Charles County that could accommodate Claire’s needs. Both were operated by United Services for Children, a United Way supported agency.

“From our initial phone call to United Services through our first visit, we felt extremely comfortable,” Jason said. “We felt good knowing there was an organization that understands what parents of special needs kids go through. It made us feel relieved.”

Claire was 10 weeks old when she entered United Services for Children. Four years later, she is still enrolled in the agency’s early intervention and early childhood education services, receiving physical therapy, occupational therapy and speech therapy.

United Services welcomes children of all abilities and levels of need with open arms. This unique approach sets them apart from other early childhood centers. The opportunity for Claire to interact and learn alongside other children – those mainstream and those with special needs – without fear of discrimination is of utmost importance to Hope and Jason. Without United Services, and furthermore, without United Way, Claire would not have this opportunity.

Hope and Jason are longtime supporters of United Way but never fully understood the importance of their support until they needed it most.

“Jason and I have always contributed to United Way. Now, it takes on a whole different meaning. If it weren’t for United Services, one of us would have to give up our job and become a one-income family,” Hope said. “The fact that United Services survives because of United Way funding has made supporting them a whole new opportunity we value even more now because we know it’s helping not just our daughter, but other people as well.”

From the beginning, United Services staff has walked with Claire and her parents every step of the way. What may seem like little things, such as offering advice, a listening ear or the opportunity for the couple to spend time with one another, has meant so much to Hope and Jason. Though, the couple agrees that one moment in particular resonates most with them – when Claire received her ticket to freedom, her chair. United Services staff provided Claire with an adapted walker with arm and trunk supports which she can use to walk by herself or with minimal assistance. Since then, Claire’s confidence and personality has continued to blossom.

“When I first saw her in that chair, I cried,” recalled Hope. “She was like a new child. She used to be limited, but now, to see her be able to roll over to play with another child is amazing.”

Claire’s physical abilities aren’t the only improvements United Services staff has helped Claire with. Margarette Sellars, speech language pathologist of United Services for Children, has worked closely with Claire over the past year and has seen leaps and bounds in her verbal progress.

“When I first started working with Claire, she was very quiet most of the time and only used one to two words to express her ideas, needs and wants,” Margarette said. “She is now using three, four and five-word sentences to make requests, answer questions and communicate with her teachers.”

“Because of Margarette, she can vocalize and hold a conversation. I didn’t know what to expect at the beginning. I wasn’t sure I’d ever even hear her cry,” Hope said. “Now, she holds full conversations, says “thank you” and asks her friends if they’re okay. To see her socially and cognitively interact with people is absolutely amazing to me.”

According to Jason, little 4-year-old Claire can be summed up in five words: “She has overcome the impossible.”

And it couldn’t be truer. Claire came into this world and never stopped fighting, and her remarkable progress, both physically and verbally, shows that. One look at her infectious smile tells you she knows it, too.

Claire will continue to attend United Services for another year before transitioning into kindergarten in the Francis Howell School District, showing her strength and will to do the impossible.

About United Services for Children

United Services creates an inclusive educational environment that values children of all abilities in partnership with the community. United Services has been a United Way funded agency since 1979.