Senior Multimedia Reporter
Eleven-year-old Aaron Edwards, whose desperate fight against a rare liver disease captured national attention last week, is now a step closer to receiving lifesaving treatment after both Prime Minister Kamla Persad-Bissessar and Health Minister Dr Lackram Bodoe intervened to secure assistance through the Children’s Life Fund.
Aaron’s mother, Neerupa Edwards, told Guardian Media that health officials contacted her last week to say arrangements were being made for her son to undergo the critical procedure, which will be financed through the Children’s Life Fund.
She said she was informed that a specialist from Argentina would be flown to Trinidad to perform the surgery at the Eric Williams Medical Sciences Complex, Mount Hope.
“The call gave us hope,” Edwards said. “We are grateful that people listened and that help is finally coming.”
In a message to Guardian Media, Bodoe confirmed that the Ministry of Health (MOH) had begun the process of assisting the family.
Since Guardian Media highlighted Aaron’s plight, relatives have raised an estimated US$20,000 needed to fund the operation.
His mother said Aaron has been unable to attend school for the past two years as his condition has steadily worsened.
She revealed that in 2024, he was diagnosed with Budd-Chiari Syndrome, a rare disorder in which the veins that drain blood from the liver become blocked.
According to medical reports, the obstruction has caused severe portal hypertension, enlargement of his liver and spleen, repeated fluid accumulation in his abdomen and dangerously enlarged veins in his oesophagus and stomach that have bled several times.
His most recent discharge summary from the San Fernando General Hospital recorded that he was admitted after suffering a major upper gastrointestinal bleed, repeatedly vomiting blood and passing black stools.
Edwards said specialists at the Eric Williams Medical Sciences Complex determined that Aaron urgently requires a Transjugular Intrahepatic Portosystemic Shunt (TIPS) procedure to reduce pressure on his liver, prevent further bleeding, control the fluid build-up and slow the progression of the disease.
However, the specialised paediatric procedure is not available locally. Because Aaron is too weak to travel overseas, an international medical team reviewed his case and agreed that a specialist from Argentina could perform the surgery in Trinidad once funding was secured.
Edwards said the ordeal has taken a heavy emotional and financial toll on the family.
Aaron’s father, Ryan Edwards, died suddenly in 2021, leaving her to care for their children while managing mounting medical expenses.
Aaron’s sisters, Angel and Victoria, said it was difficult to cope with the emotional strain of watching their younger brother battle the life-threatening illness.
“To live through something like this with your own brother… the emotions are overwhelming. It’s depressing. It’s stressful. All I want is for him to have a long, healthy, peaceful life without doctors around him all the time,” Angel said.
Although the family is now optimistic following the Government’s intervention, Edwards said they remain grateful to everyone who donated, shared Aaron’s story and offered support during one of the most difficult periods of their lives.
Anyone wanting to donate to Aaron’s aftercare can make contributions to Neerupa Edwards Republic Bank Savings Account 500 040 338 131 at the Penal Branch or call Angel (868) 365-7405 or Edwards at (868) 490-5189. A GoFundMe account can be reached at https://www.gofundme.com/f/help-with-urgent-lifesaving-medical-treatment-for-aaron.
