When Megan and Glen Jusczyk of Groveland learned that their 2-year-old daughter was riddled with Stage IV neuroblastoma, a cancer that develops from nerve tissue, it was sheer hell.
Their daughter, Malia, had a grapefruit-sized tumor in her stomach near her adrenal gland. At the time, tummy aches were the only symptom, but then came the lesions and a sobering prognosis.
That was three years ago. Malia is now a 5-year-old girl with no evidence of the disease. Basically, Malia is in remission, and when we met the family recently, she seemed like any other healthy, happy, energetic child.
Megan said, with tears in her eyes and her voice cracking, "Sometimes I just feel like, 'Who am I to be her mom? How did I get so lucky that I get to witness such a miracle?' Because, really that's what it is."
There are 650 cases of neuroblastoma diagnosed in the U.S. each year; yet, less than four percent of all cancer funding goes to pediatric cancer research. This is why this family's "miracle" has inspired them to raise money for other families fighting the unthinkable.
"How could you not try to improve the situation for those kids?" asked Megan. "Because, they all deserve to be as lucky as Malia."
In an effort to raise money, Megan will run a relay at the 23rd Annual Great Floridian Triathlon at Clermont's Waterfront on Saturday. Glen will participate in the Ironman competition, and a bunch of other family and friends who showed up for a Friday night pre-event dinner at the local Carrabba's will take part too.
Fifty percent of funds will go to Florida families with kids who have neuroblastoma. The other fifty percent will go to pediatric cancer research.
Glen said the triathlon pales in comparison to the marathon his little girl is running.
"Our daughter looks to us for protection, and we're allowing everyone to poke and prod and hurt your kid and she says, 'Mommy and Daddy, why are you allowing everyone to hurt me all the time?' So, you know, you gut it. I still ... I mean, really, what do you say?"
At the gathering of friends and family, Malia thanked everyone in attendance.
"I love you, and I give hugs and kisses!" she exclaimed.
The Jusczyk's have even started their own non-profit For Kid's Sake Foundation to raise money for families who face similar challenges which they have had to face. Malia's website is appropriately called MaliaCrushesCancer.com.