Toddler Still Smiles Despite Daily Fight for Survival, Mom Holds Family Together
By: Jenna Breit
HERNANDO – They say when it rains it pours and in the case of one Spring Hill mom, the storm rages on and doesn’t appear to be letting up anytime soon.
Michigan native, Brandy Carter, made the decision to relocate her family to Spring Hill to be closer to her mother after she fell ill. With her husband suffering from Lupus and Multiple Sclerosis, Carter needed all the help she could get in caring for their children, while her mother recovered. But the worst news and every mother’s worst nightmare was still to come.
One day, Carter noticed that her now 3-year-old son Ray-Ray suddenly stopped sleeping. Knowing in her heart something just wasn’t right, she brought him to the doctor where they made a shocking discovery. Ray-Ray, who is now in remission from lymphoblastic leukemia, was diagnosed with a rare chromosome disease which has spiraled into a myriad of previously undiscovered health issues. “All of a sudden our little angel quit sleeping. He sleeps maybe a couple hours a day, that’s it,” Carter says. She further explained, “He has extra chromosomes which has caused a multitude of health issues, starting with his heart. That’s is what the main concern is right now his heart randomly stops at any given time he can go into sudden cardiac arrest. Doing nothing, he can have a heart attack and there’s nothing we can do.”
Carter also goes on to explain that Ray-Ray’s condition is in fact so rare that he has nine specialists and only four hospitals in the United States can treat his condition. “He is a rare case. They’ve never seen anything like what’s going on with him and insurance does not cover much of what he needs to help him because everything they’ve tried has failed,” she says. But Carter’s overwhelming burdens don’t stop there.
In the midst of caring for Ray-Ray’s chronic illness, Carter lost her job because of the time she had to take off to care for her ailing son. On top of that, her mother had a massive heart attack, which rendered her unable to work. Now, with the financial burden of Ray-Ray’s health expenses, along with being the sole supporter for her family, Carter is using all her days off to try and raise money for her son’s healthcare. “I am nonstop doing stuff, we’ve had t-shirts made, window stickers made, car washes going, whatever we can do as parents to raise the money ourselves. It’s challenging. We make flyers, we do it all on our own, all the expenses come out of our pocket.”
Local high school student, Lauren Gambino, spends much of her spare time volunteering in the community – often to help Ray-Ray’s mom who just can’t seem to catch a break. “He likes Batman, I can tell you that! He loves to swim – this kid was diving in at least a 5’ deep pool, no goggles – he literally isn’t afraid of anything. He’s fearless,” says Gambino. “He’s outgoing and he’s fun, you would think he’s just a normal kid. He doesn’t understand what’s going on with him. He knows he’s sick but he’s so positive. He’s always smiling and always laughing. He’s full of life. He’s still a typical 3-year-old that wants to have fun, but he can’t,” Gambino stated.
Carter describes her son as, “amazingly intelligent. He’s in school and at 2-years-old, he tested at a first grade level”. She adds, “He unfortunately is restricted no activities. Nothing that can excite him, no overheating. The more active he gets the more his heart just stops. We’ve had nine episodes since January of his heart just stopping.” The only thing Carter allows Ray-Ray to do is swim. And eve that is taking a chance, says Carter. Sadly, Ray-Ray thinks he’s being punished because he’s not allowed to have recess at school.
Ray-Ray is scheduled to undergo testing and surgery on July 25th to insert a pacemaker and a defibrillator, which comes as a huge risk due to his leukemia just going into remission. Carter says the cost for Ray-Ray’s surgery is $12,000 and insurance doesn’t cover the cost. “They can figure out a treatment plan for him. This test is going to determine what will help him and possibly save his life. The heart surgery is going to be the most important thing because I want to make sure his heart doesn’t stop. They have to be very careful because of the leukemia and if they open him up while he’s still in remission, it could spread like wildfire,” Carter relayed with fear in her eyes.
When asked how she remains so strong, Carter replied tearfully, “Everyone always asks me how I hold it together, and I’m just like, I have to”. I go to work and I go home that’s it. I’m always on pins and needles because if I walk out that door, it could be the last time I see him. I just roll with it I just do what I can and know that I’m doing everything. As a parent it sucks because it’s like I’m supposed to be able to provide and do what he needs and I’m at a loss here.”
If you would like to show your support for Ray-Ray and help cover the growing cost of health and travel expenses, there will be two pancake breakfasts held in June. The first event will be held at Applebee’s on Commercial Way this Saturday, June 10th, from 8AM – 10AM. Tickets are $5 and can be purchased at the door. To honor Ray-Ray’s love for Batman, Spring Hill’s very own Batman will be making an appearance. The family has also set up a Gofundme account for assistance in getting Ray-Ray the help that he so desperately needs.
Follow this link if you would like to make a donation: www.gofundme.com/rayrayfrench
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