Gerome James holds his baby son Nathaniel, who has a rare liver disease and needs surgery abroad.

Jesse Ramdeo

Wrapped up in the arms of Cheva James is her bundle of love, joy and happiness, her 16-month-old son Nathaniel James.

But beyond the first glance is a heart-breaking story of a baby boy battling a rare liver disease that only one out of every 150,000 children are born with.

James’ family is now raising funds for a life-saving surgery needed to rectify young Nathaniel’s issue.

In just over a year, little Nathaniel has spent nearly more time at hospital fighting Type Four Choledochal cyst than he has at his Fyzabad home with his family. According to an online medical journal, Choledochal cysts are congenital conditions associated with benign cystic dilatation of bile ducts. They are classified into five types and Nathaniel has been diagnosed with type four. In some cases, the cysts can be difficult to eradicate and liver transplantation is the only hope for survival. In fact, failure to undergo surgery often leads to lifelong complications and may progress to liver abscess and life-threatening sepsis.

“It is a cyst by his axillary tree, so it affects his bile, it has caused his liver to get enlarged and now it is experiencing cirrhosis. As a result of the cirrhosis, his abdomen is swollen. He has jaundice, poor weight gain and is in desperate need of a liver transplant,” Cheva told Guardian Media yesterday.

Nathaniel’s medical condition now puts him in urgent need of a new liver and his painful journey has tugged at the hearts of his parents.

According to his father Gerome, it has been painful witnessing his son’s battle against the rigours of his disorder.

“Most recently he has bleeds, he has bleeds where we would open his pampers from time to time and it will be filled to capacity with blood. After two or three hours, he would vomit blood with clots in it,” he said.

“It is not easy holding your baby and seeing him bring up blood, not knowing if he would make it for another hour.”

Gerome and his wife explained that the possibility of losing their baby boy weighs heavily on their heart.

“There were times when we drove to the hospital not knowing if when we arrive if he would be breathing or not,” he admitted.

Strength, courage and hope have now become the watchwords for Gerome and Cheva. For them, their little boy, who has already been through battles that would have already left many broken, has been their greatest blessing.

“On his birth, he came a bit early, he came in at six months and he came in at just over 900 grammes. When he came out he was really small and they did not know if he would survive and I said right then and there, yes he is a gift from God. He was rushed to Neonatal Intensive Care Unit but right there I came up with the name Nathaniel because it translates to God’s gift.”

With their faith leading the way, Gerome and Cheva have set out on a journey to ensure their little boy gets his life-saving treatment abroad since the surgery is not available here in T&T.

They are hoping that the public can also join them in a quest to raise over $1 million. The couple started a Fund me TNT page to help raise the money and with every passing second, they are steadfast in their prayers that they will inch closer to saving their son’s life, “Unfortunately, liver transplants aren’t done in T&T and for the second part of the question, when we liaised with the doctors they said approximately one million TT dollars was needed to cover the costs for the surgery.”

Gerome said it has been six months since the family applied to the Children’s Life Fund. He said he was informed that once an approved donor is identified, arrangements will be made to continue with the process. He said he is more than willing to be a donor but several tests have to be done to determine whether or not he is a match for his son.

The family maintained that despite their son’s condition, they are holding on to hope and their love for him will remain unwavering. Anyone wishing to assist the family can contact them at 366-2859 or 322-7994.