Critically ill man wants DNA law changed - Knowing family medical history can save lives

End stage renal failure patient Oraine Simpson is adding his voice to the debate about whether mandatory DNA testing should be done at birth.

Diagnosed with stage 5 renal failure at just 16 years old, Simpson's life has been a roller coaster, and he has had to endure several operations including an open heart procedure. His only chance at beating this disease is through a kidney transplant, but being the carrier of the rarest blood type - B negative - his chances are less than slim.

"You usually get your genes from one side of the family, and for me it's my father's side. But I don't know about them. It has always been my mother and if she could have donated, she would have done so willingly," Simpson said.

"It is not right for you to have a birth certificate with a presumed father on it. I think the test should be done at birth because it is paramount for you to know your family history, and if there are communicable or non-communicable diseases present," Simpson added.

He admitted that knowing his father's family history may not have prevented him from getting renal failure.

"But at least I would have had a safety net or hub of potential donors. There were times when my surgeries had to be put off because of my rare blood type or they would have to have a million donors going so they could prioritise me for getting blood," he added.

The 28-year-old, who shares his journey with the chronic disease on his social media pages, told THE WEEKEND STAR that when he first heard about renal failure, he thought that after spending a few months in the hospital that his health condition would be reversed, and he would not have to go back to the hospital.

"But afterwards I found out that it would have be [going] consistently unless I get a transplant, and with that I would need an immune suppressive medicine to keep them working. It was like a rock hit me," he said. Currently, Simpson's survival depends on dialysis treatment that he receives three times weekly.

"Thankfully, I got a chance to do it at KPH for free and I do one privately," Simpson said.

"A kidney transplant is the only thing that can help me but Jamaica doesn't have a transplant list, but they do have a live donor system."

An epitome of strength and resilience, Simpson credits that to the support of his mother and wife Danielle who he listed as his towers of hope.

"I remember walking home one day and someone tried to rob me and when I ran off, I fell to the ground and couldn't walk. A taxi man brought me to the hospital. Her (Danielle) birthday was the next day and she spent the night sleeping in the waiting area as she was not allowed on the ward. She stayed until the next day when I was discharged and that was pure selflessness," he said.

Simpson said he is still very ill but is in good spirits, and has even started a small party rental business.

"As it relates to renal failure and disease, I am hoping that more light will be shed on it from a media standpoint as there is still lots of misinformation as it relates to the disease and kidney failure," he said.

Simpson is looking forward to celebrating his 29th birthday on December 5; it's an age he never thought he would have ticked off on his calendar.

"A lot of patients don't really get a chance and I know a lot who have died since my diagnosis ... but God has been good to me," Simpson said.

He lamented that there aren't enough machines in the public system to facilitate the number of persons who need dialysis.

"We don't have the space to treat these people. It's $15,000 to $20,000 for each treatment and you need two sessions of dialysis weekly, so you are basically working to treat yourself. We need to have a donor system," he added.