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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:

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  • If there are any questions please feel free to ask .. I am his mother and so thankful for everyones kind words and prayers

    Wednesday, 14 June 2017, 9:07 pm
  • Bruce, excellent post!! I would like to add that they bring children in from other countries to do special surgeries, for free, travel, accommodations for family etc. For free.This is ok, but I personally think they should take care of their own citizens FIRST, Also, why ican’t this childbe automatically enrolled in medicaid?? If anyone needs it he does. Prayers for everyone involved.

    Friday, 9 June 2017, 7:27 pm
    • Something isn’t right here. I have a some who is disabled and there isn’t anything that they won’t cover or find a way around it. I’m going to do some research and get in trouble with the mother. My sons stay at all children’s hospital was well over a million dollars. They can cover 12K I’m sure.

      Saturday, 10 June 2017, 9:08 am
      • I know what they do and don’t do i work in medical I have worked closely with doctors and insurance. Would you like my contact information on who I have and many have spoke to including insurance I can help your research go a little easier and faster. The test required of whole exom dna sequencing done at few places and results can still come back too inconclusive so they do not want to pay for it. Not to mention Medicaid doesnt cover out of state testing. I’m not saying your wrong in any way and if u find a way that this is covered please share with me I am open to anything and anyone finding more information than I know of. And I would feel better if people did research and looked into this that is why I placed the Alabama location and phone number on his awareness flyer so they also may contact the clinic and lab directly for testing information.

        Sunday, 11 June 2017, 11:18 am
  • First off thank you Jenna for such a heart touching story and a special thanks to those reaching out to help this family.
    Now for my rage. How on earth can a medical insurance company practice medicane. Once a doctor determermines the medical need how can an insurance company refuse to pay. This company needs to be made public and boycotted. This is just as wrong as wrong can be. Second if the insurance is going to trun thier back on this family what about the doctors and hosiptals offering to do it for free. Lawyers take pro bono cases what about a doctor stepping up to the plate. I am sure it will not hurt them as much as it hurts thisi this family.
    Sorry for the long post. I am just sick of health insurance companies ruining so many lives. Cost is ridiculously high then add in all the co pays.

    Prayers for the family.

    Friday, 9 June 2017, 5:18 pm
  • We feel so sorry for him so we will be at the pancake breakfast tomorrow. He will be in our prayer.

    Friday, 9 June 2017, 3:34 pm
  • Tom:
    I know you catch.a lot flack about certain stories of late. I want tell you this story was, in my opinion, well written and heart felt. Thank you for bringing it foward in such an eloquent way. I’ll be sure to spread the word about the Pancake Breakfast and GoFund Me account.

    Friday, 9 June 2017, 3:15 pm
      • I’m the singer/guitar player in a group that does lots of benefits for kids. I know a lot of musicians and bands , including but not limited to, Michael Allman (Gregg Allman’s eldest son) whom lives in New Port Richey . I’m sure it’s possible that a benefit can be put together featuring the areas best bands including Allman. Who can we contact?

        Saturday, 10 June 2017, 1:02 pm
        • John, you can also contact me on Facebook. I would love to get this coordinated.

          Sunday, 11 June 2017, 9:39 am
        • You can also message me I’m his mother [email protected]

          Monday, 12 June 2017, 5:46 pm
  • God Bless the boy and his family Prayers to all.

    Friday, 9 June 2017, 2:34 pm
  • Extra special prayers go out to this strong, brave family. And you think YOU got it rough?

    Friday, 9 June 2017, 1:23 pm
  • RAW FRUITS !!!!!

    People are sick and dying by living a lifestyle of eating dead foods. Feed this child RAW FRUITS, and nothing else.

    Friday, 9 June 2017, 12:52 pm
  • God bless this boy and his family.

    Friday, 9 June 2017, 12:37 pm

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