Parent’s Hometowns: Dad – Melbourne, FL & Mom – Strongsville, Ohio
Involvement with HFGF: 1 Year
Few things are as gut wrenching as watching your baby prodded and poked while you stand by helpless to stop the tears. Chris Carson and Alicia Norris know these haunting emotions all too well. Their second son, Noah, who just turned a year old, was late in being diagnosed with Hemophilia, causing an array of fact-finding hospital visits.
Initially, an active bleed during Noah’s circumcision waved red flags, but all was deemed well. At a six-month-old wellness visit, there was bruising on Noah’s wrist. A few weeks later, Alicia noticed a large bruise and hemotoma near his shoulder. Their pediatrician sent them to ER for an x-rays and bloodwork. While there was still no diagnosis, the PTT tests signaled a possible clotting deficiency.
The couple then traveled from their Indialantic home to Orlando. In the end, Dr. Shveta Gupta at Arnold Palmer Hospital for Children discovered why Noah was bruising. She gave Alicia and Chris the news in early April that Noah had severe Hemophilia B.
“I am a planner,” says Alicia. “If there is an issue or a problem, I like to get to the root of it. And deal with it. It was difficult to hear the news, but a relief to move forward.”
Alicia says there is no Hemophilia in her family that she knows of, including Noah’s five-year-old brother, Chase. A UCF grad, who is working on her Masters, Alicia has two sisters, her eldest who has two sons void of Hemophilia.
“So far it’s spontaneous mutation, and we have undergone genetic testing for Noah,” she explains about trying to find some answers. “Next, I will be tested as a carrier.”
Chris credits the Foundation for bringing him and Alicia up to speed on Noah’s bleeding disorder, and although rare, realizing he was not alone.
“We went to HFGF’s annual family program and saw all these other kids with Hemophilia,” he says.
Chris and Alicia understand they have an atypical road ahead of them as Noah ages. They have already replaced much of their tile with extra padded carpet. End tables and coffee tables that may pose a risk have been removed.
“We often hear that people with Hemophilia are energetic,” says Alicia. “With Noah, that’s very true.”
Over the past six months, Alicia and Chris have become inspired as well. Alicia’s colleague, whose teenage son has Hemophilia has been a wonderful resource, and the acclaimed feats of Chris Bombardier, who climbed the seven highest summits on all seven continents, puts the couple at ease knowing anything is possible with Hemophilia. They are also becoming more educated by attending bleeding disorder conferences.
“We are trying to grow our knowledge base and be better prepared,” notes Alicia.
The couple also upped their participation in the Foundation. Chris reached out to his friend, Mark Pieloch, who owns the American Muscle Car Museum in Melbourne. The museum is not open to the public, but available gratis for fundraising events.
“He agreed to open the museum because of my friendship with him so we can raise money and awareness for Hemophilia.” The event, dubbed Red Party, is slated for January 18, 2020.
“People say this is life changing, but that we will get through this,” says Chris, noting that Noah will begin infusing very soon. “We have had it kind of easy up to this point.”
When you support events like the HFGF Red Party (mentioned above), you are helping kids like Noah and families like Chris, Alicia, Chase, and Noah. 89% of all fundraising dollars support educational programs, emergency financial assistance, Camp Spirit tuition, scholarships, and more. Click here to learn more about the HFGF Red Party.