Common Variable Immunodeficiency – What you should know
In the movie of Kristy Cacucciolo’s life, she might be played by a passionate, energetic, relentless type like Julia Roberts or Ashley Judd. Her 9 year old son, Justin, possibly played by some young and upcoming scamp like someone out of the Culkin clan. And the story would be a classic tale about the endearing strength of the human spirit. The challenge. The battle. The triumph.
But this is no movie. No big time Hollywood producers. No PR team. No production crew. No ritzy location. Just a mother fighting for her son’s life in the small suburban community of Upland Hills.
After finding out less that a year ago that her son was diagnosed with a rare blood disease known as CVID or Common Variable Immunodeficiency, a disorder that constantly kept Justin sick and the young athlete from playing sports, Kristy picked up the torch in her son’s honor. With no cure and very little idea on how to treat the symptoms Kristy worked hard with doctors and found that weekly plasma transfusions was the answer, but she didn’t drop the ball there.
Today, Justin is back to his old, active self and all thanks to his mom. Last week Kristy organized a HUGE community blood drive at her husband‘s Chevy car dealership. No easy feat, pulling it off took the help of a small army including her large Italian family, local sponsors like Edible Creations that donated gift certificates to donors, celebrities like basketball legend, James Worthy, friends, neighbors, and national organizations like Red Cross who came out and worked around the clock to meet the needs of the hundreds of donors that showed up. Luis Ramirez, a regional director and blood drive veteran, said he’s never seen such a successful turnout.
Garnering more than 250 donations last week, this was Kristy’s second time around. The first blood drive was held in March and was equally as impressive. Kristy says at that time she expected merely 50 people to show. The results, more than 100.
Kristy has committed to doing a minimum of two blood drives a year. It takes more than 100 donors to provide enough plasma to provide for Justin’s weekly treatment, so while the impressive turnout will definitely help Justin with his transfusions, more importantly Kristy hopes to help others in need and raise awareness about the rare disease.
She says one donation helps 3 people- plasma for CVID patients, platelets for cancer treatment and blood for accident victims and surgeries. And getting people to show up to the event whether they donate or not starts a much needed conversation about CVID.
When asked what the biggest challenge was in organizing the events, Kristy modestly replies, “None.” She says she doesn’t think anything she is doing is difficult. A performance worthy of an Oscar, and a role played better than any A-list celebrity, but no award necessary here, all Kristy wants is for her son to keep fighting.