12-Year-Old Cole's Urgent Health Struggle: Family Seeks Support for Rare Medical Condition

What began as a joyous 12th birthday celebration for Cole Reuben became a life-changing drama when he began complaining of strange pains in his legs and extreme fatigue. Days later he was in a coma.

Now unable to move, robbed of all but three words of speech, the football-loving pre-teen’s family has pleaded for help to fund urgent healthcare and a path to recovery.

Cole, a first-form student on the honour roll at Christ Church Foundation, and a defender on the school’s Under-14 football team, went out for breakfast with his family on April 5 to celebrate his birthday.

“He sensed that something was wrong due to the way his legs and body were feeling,” mother Nicole Scantlebury said.

“A few tests and a few days later on April 14, he was admitted to the Queen Elizabeth Hospital (QEH).”

He had apparently suffered a stroke and lost functional movement of his left leg, she said, beginning a family’s journey with an unknown, potentially rare, debilitating and life-threatening disorder.

Cole had to be placed in an induced coma and ventilated to save his life.

“One of the scariest moments for me was experiencing first-hand his near-death experience and watching his fragile body shut down right before my eyes,” Scantlebury told Barbados TODAY.

The mum noted that the QEH’s supportive staff stabilised Cole and ran a battery of tests to find out what was causing multiple brain infarctions, essentially a series of strokes within the brain. A brain infarction is an area of dead or damaged brain cells caused by a lack of blood supply and oxygen.

With limited medical expertise here, the mother said second opinions were sought from neurology specialists and hospitals internationally.

“We were airlifted out of Barbados into an ICU [Intensive Care Unit] in Colombia where Cole still has a myriad of ongoing tests and outstanding results to determine the cause of condition including genetic DNA sequencing and Myelin Oligodendrocyte Glycoprotein (MOG) to name just two of them,” she said.

MOG is a protein found in the protective coating (myelin sheath) that insulates nerve fibres in the brain and spinal cord. Testing for antibodies against MOG can help diagnose certain neurological disorders that damage this myelin coating.

Cole has regained a tiny fraction of the ability to speak, is being tube-fed and his motion is still limited. As results revealing his diagnosis are pending, he has been undergoing several daily therapy sessions to improve his speech, breathing and self-feeding capabilities.

In the meantime, his family has established a GoFundMe account, inviting help from the public to go towards Cole’s full recovery, including medical expenses, living expenses, accommodation and any travel expenses.

“Right now, there are many unknowns. We don’t know how long we will be here for as yet. After we get the results and have a plan of action we will have a better idea of what to do for him and where to go from here,” Scantlebury said.

But she shared promising news: Cole has been able to speak three words since awakening from his coma.

“He said his name, and that of his favourite footballer, Messi, and today he was able to say ‘hello’. Otherwise, he communicates by nodding or shaking his head,” she said.

The mother of three was brought to tears as she described how her other children, ages 18 and 13, have not been coping with the state of their sibling’s health.

“It’s tough. If not for the mercies of God, I don’t know what would’ve happened,” she said. “That’s my strength right now because when I think of the severity I get so overwhelmed. It has been traumatic and unexpected so I’m just trying to process it day by day as needed and trying to be strong for him because he needs me to be strong.

“At this point all I can do is pray. My hope, and I know his hope too, is to be able to return to school and play football again.”

The family has so far raised US$20 782 (BDS$41 564) of their GoFundMe account’s goal of US$50 000 (BDS$100 000) at www.gofundme.com/f/medical-expenses-for-12-yr-old-footballer-airlifted-to-icu.

shannamoore@barbadostoday.bb