FLORIDA — Eyewitness News discovered a gap in Medicaid coverage that's affecting local children with cancer and rare blood disorders.
A bone marrow transplant can cure the children, but Medicaid does not cover expensive testing that must be done before the transplant can happen.
Eyewitness News found out how the community is working to fill in the gap and make sure all children get this life-saving procedure.
Logan Brigandi looks like a healthy 3-year-old, but he's not.
Logan has been sick since the day he was born. He has a mysterious blood disorder that is so rare, doctors cannot diagnose him.
"It's just really scary not knowing what's going to happen,' said Logan's mother, Amanda Brigandi.
To stay alive, Logan gets a blood transfusion every three weeks.
There is one answer: a bone marrow transplant.
But that answer comes with a big question: Who will pay for it?
Logan is covered by Medicaid. The cost of his transplant will be covered, but critical pre-transplant blood tests, and tests to see if his family members are a match, are not.
Those bills can run as high as $40,000.
That is money that Logan's single mom does not have.
"I think it's crazy if Medicaid is going to pay for the actual treatment, why are you not going to pay for the testing?" asked Amanda Brigandi.
Testing not covered by Medicaid is a crucial first step in the transplant process. It's the only way doctors determine the child's tissue type to find the best donor.
"Bone marrow transplantation for some of these kids could be their only choice for a cure," said Dr. Fouad Hajjar of Florida Hospital for Children.
Hajjar said parents often choose between paying their bills and paying for the testing.
"They are struggling to make ends meet and feeding their family," Hajjar said.
Margaret Guedes knows the pain those families go through because she lost her son to cancer.
To make sure children get the care they need even if their parents cannot afford it, Guedes started "Kids Beating Cancer."
The group donated $1 million to Florida Hospital's Pediatric Transplant Program to pay for testing not covered by Medicaid.
"This is giving me hope that he can have a full life and that he can have the surgery and be saved," said Amanda Brigandi.
Logan's been on the transplant waiting list for eight months.
Thankful for the financial support, Amanda Brigandi says she hopes her prayers for a cure are answered.
"That would be the best Christmas present ever," she said.
Logan's family is still searching for a match for his transplant.
WFTV is a proud to partner with Track Shack and Florida Hospital for the Reindeer Run at Sea World to raise money for children with cancer and rare blood disorders.
Last week, more than 4,600 runners joined WFTV at Sea World to benefit the children being treated at Florida Hospital.
Funds raised will help pay for testing not covered by Medicaid and will make sure children get the care they need.
WFTV
