Jerome and Cheva James share a light moment with their son Nathaniel.

A little boy may be losing a valiant and hard-fought battle against a rare liver condition because his only lifeline is remaining silent.

Last September, baby Nathaniel James grabbed the Guardian newspaper headlines as he struggled to overcome the disease. Doctors stressed his survival hinged on urgent medical treatment only available abroad and a liver transplant.

Back then, the story rallied members of the public behind the James family, people pledged donations, offered prayers and words of comfort however the infant’s parents say they have fallen behind the race against time as the Children’s Life Fund appears to have broken its promise to fund the boy’s medical expenses.

On Friday, a team from Guardian Media visited the James family’s home in Union Hall, San Fernando where it was revealed that the infant’s painful condition; type four Choledochal cyst, not only persists but has progressed.

“His abdomen is getting even bigger, even after we had the interview there was one particular time Nathaniel had a bleeding that was so bad, I was in the back seat with him and we were rushing to the hospital and the blood was just flowing, I was just praying not to lose my boy.”

Nathaniel’s mother, Cheva James explained the condition has caused her son’s liver to enlarge and restricts the flow of bile that helps in digestion resulting in poor weight gain. Baby Nathaniel also battles bouts of jaundice.

While she and her husband, Jerome say they remain indebted to the public for the outpouring of love and support received after Nathaniel’s story was shared seven months ago, they remain disappointed that after meeting all the requirements, the Children’s Life Fund is yet to intervene as promised.

“Everything necessary we would have sent to the Children’s Life Fund, we applied for an exemption, we got through with it, we also got vaccinated so we can travel to Argentina for the operation as well everything possible we needed to do we got it done.”

With tears flowing down her face, Cheva explained with every passing day her son struggles without access to the emergency care needed, both her and her husband’s hearts shatter.

“He wants to do certain things but his body is holding him back because of this sickness and I, so I really, really pray, I know the day will come when Nathaniel will be out of this pain.”

As Nathaniel nears his second birthday, weighing just ten pounds minus the water weight gathering in his abdomen, Cheva continues to question why her son’s ordeal languishes.

“It seems to me they are hesitant to approve Nathaniel’s case based on the success rate and survival chance of the surgery.”

When contacted, Health Minister Terrence Deyalsingh referred our queries to the Ministry’s corporate communications department.

The James family pledge to never give up on the one person they can’t go a day without and are hopeful the board at the Children’s Life Fund can honour its promise.

Members of the public wishing to offer support to the family can contact them at 322-7994.