Senior Multimedia Reporter
Eleven-year-old Aaron Edwards longs for a chance at life. He’s not been in school for two years, as a rare liver disorder has left him too weak to live a normal childhood.
But while other sick children are covered by the Children’s Life Fund for treatments abroad, his mother Neerupa Edwards says Aaron is too weak to travel and locally, there is no doctor able to perform the surgery.
Speaking to Guardian Media, Edwards said she lives in Prime Minister Kamla Persad-Bissessar’s constituency along Penal Rock Road. She said every day, she lives with the constant fear that the swollen veins in Aaron’s body could rupture without warning, causing him to vomit blood. It happened several times in the past, and Edwards said the horror of seeing this has made her sick with worry.
“The first time he vomited blood, I didn’t know what was happening,” she recalled.
“You don’t know what to expect. When you see your child bringing up blood like that, it’s frightening. You feel helpless.”
This is why she spends every hour at his side, although she is forced to watch helplessly as his abdomen stretches with fluid because blood can no longer drain properly from his liver.
“He used to be the life of everything,” she said.
“He was always running, always playing, always trying to fix something. Now he has no energy. He has no appetite. He’s always tired.”
She said in 2024, Aaron was diagnosed with Budd-Chiari Syndrome, a rare condition in which the veins responsible for draining blood from the liver become blocked.
A medical report states the obstruction has caused severe portal hypertension, enlargement of both his liver and spleen, repeated fluid accumulation in Aaron’s abdomen, and dangerously enlarged veins in his oesophagus and stomach that have bled several times.
His latest discharge summary from the San Fernando General Hospital shows he was admitted after a major upper gastrointestinal bleed, during which time he vomited blood repeatedly and passed black stools.
Edwards said specialists at the Eric Williams Medical Sciences Complex in Mt Hope have since confirmed he urgently requires a Transjugular Intrahepatic Portosystemic Shunt (TIPS) procedure to reduce the pressure in his liver, prevent further bleeding, control the fluid build-up and slow the progression of his liver disease.
The highly specialised procedure is not available within Trinidad and Tobago’s paediatric health system, Edwards added.
Unwilling to lose her son, Edwards said Aaron’s case has been reviewed by an international team, and a specialist from Argentina is prepared to perform the operation at the Eric Williams Medical Sciences Complex if the funds can be secured. The procedure carries a quoted cost of US$33,000.
She said before doctors discovered the cause of his illness, Aaron’s abdomen had swollen dramatically, with almost five litres of fluid trapped inside. The fluid had to be drained through a needle inserted into his abdomen.
His older sisters, Angel and Victoria, also begged for assistance to help him.
“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.
She said the family’s savings disappeared long ago under the weight of transportation costs, medical tests and everyday expenses. Their father, Ryan Edwards, died in 2021 from a sudden ailment, and finances have been tight since then.
“Family help where they can by buying groceries, paying utility bills or dropping off meals, but the cost of Aaron’s surgery is beyond our reach,” Angel said.
Making the situation even more difficult, Edwards said, the Children’s Life Fund cannot finance Aaron’s treatment because the programme supports life-threatening conditions requiring overseas medical care. Aaron is too medically fragile to travel abroad, leaving the family to raise the money needed to bring the specialist to Trinidad instead.
She has approached charities, organisations and the Prime Minister’s constituency office seeking assistance, but says time is running out.
“The specialist wanted to do the procedure within a month,” she said.
“That month has already passed. Everywhere we go, they tell us six to eight weeks or three to four months before they can get back to us. We don’t have that kind of time.”
Both Prime Minister Persad-Bissessar and Health Minister Dr Lackram Bodoe have since reached out to the family.
Anyone wanting to assist can donate to 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://gofund.me/e567ac2e8
