SEVENTEEN-YEAR-OLD Jahmar James’ world was shaken when doctors delivered a devastating prognosis: He would not live beyond his early 20s.

The prediction is due to the severity of his sickle cell anaemia.

Though, initially, he was heartbroken, the resilient teenager, who is also deputy head boy at Holy Trinity High School in Kingston, is confident that he will defy the odds because God has the final say, not man.

Sickle cell anaemia is a severe form of the inherited blood disorder sickle cell disease. It is caused by a genetic mutation that leads to abnormally shaped red blood cells, which can cause blockages and lead to pain, fatigue, and infections.

Diagnosed with the disease when he was a toddler, Jahmar shared that both of his parents have the sickle cell trait.

“Normally, during the cold times, my joints hurt and I feel pain, but I won’t say I feel pain a lot. It was worse when I was younger, because I basically lived in the hospital, at Bustamante Hospital for Children, for years. I think I was in the hospital for two years straight, in and out,” the youngster told the Jamaica Observer.

“That two years for me was rough, because one, I not only had drips in my hand, but I had drips in my head. I usually had drips in my foot and I was mostly bedridden. I couldn’t eat some foods, and I couldn’t eat sometimes, but I tried. For the most of it I was young, so I didn’t really understand,” Jahmar said, adding that he was about nine or 10 years old at the time.

He shared that he also spent much of his time at the Sickle Cell Unit at The University of the West Indies, watching as doctors and researchers worked to treat his condition. He told the Sunday Observer that his condition improved and the anxiety surrounding it and his future started to melt away.

However, by the time he was about 13 years old, Jahmar received the gut-wrenching news that, based on his medical history and the state of his condition, his lifespan would be 20 to 25 years.

He shared that the news was particularly disturbing because at the time he had lost one of his friends who had also been given a death date due to sickle cell. His friend was given a timeline of 18 to 19 years to live. He died at 19 years old.

“It was traumatising to know that I got near the same age lifespan. We always said, ‘Oh, we’re gonna get through this,’ but to see one of my close friends who had sickle cell, the same thing I had, died at his lifespan, that’s how I started to fret again,” Jahmar confessed.

“When my friend died I was admitted to the hospital for two weeks and the doctors said I couldn’t leave, and my mother said, ‘Let’s just take the chance and see’ how I would do at home. I did take the chance and I was good at home,” he recounted.

Jahmar shared that after experiencing the pain of his friend’s passing, coupled with his own prognosis, he decided to shift gears and focus on the positive things in life.

He told the Sunday Observer that, while his condition has improved, there are still moments when he finds himself thinking about the timeline he’s been given.

The 17-year-old said that while at The University of the West Indies recently, he decided to create a video for his social media page. However, he was soon overcome with emotion when he had a flashback to his younger days at the Sickle Cell Unit at the Mona campus and was reminded of his prognosis.

Jahmar shared that, though it was a very vulnerable moment, he still decided to share on social media to remind people with sickle cell anaemia who might have been given a death date that they are not alone.

“When I was younger it usually affect me a lot. I look back on that and say it’s not something for me to worry about, because it doesn’t affect me how it usually affects me back then,” he reasoned.

The youngster said that while he knows people with sickle cell anaemia who have passed, he is aware that there are some who have the disease and live well beyond their expected lifespan and that motivates him to live life to the fullest.

“People don’t have the last say. God always has the last say. God is always the last man standing who has the last say,” said Jahmar.

“I was given a lifespan and I know that with God I can do all things through Christ who strengthens me, so I’m praying. It’s not everything someone says that you should believe, and it’s not everything someone says negatively about you is actually right, so don’t focus on the negative part. Focus on the positive,” the teenager encouraged.

While his outlook on life is more positive now, the 17-year-old shared that, in hindsight, he doesn’t think it was in his best interest to know about the predicted timeline for his life.

“I feel like they could let our parents know, but I’m a child, and I don’t feel like letting me know that at that age, to give me trauma when I’m in school focusing on schoolwork. I don’t feel like that’s something they should have told me. I feel like that’s something they should have spoken to my mother about let my mother know, and if my mother wants to open up to me about it, then yes,” he told the Sunday Observer.

Now the teenager said he is looking forward to a bright future, and has a great support system, including his principal, Reverend Carl F Clarke; his mother; and siblings.

Jahmar said that, due to his frequent hospital visits, he missed a significant portion of school and it was difficult for him to re-enter the education system. That battle was made even more difficult due to what he said was persistent bullying in his first year of high school because of the way he walked.

A creative at heart, the youngster shared that he is an aspiring model who often watches shows on modelling to cope with his reality.

“Starting seventh grade I was like, ‘Wow, I don’t want to come [to] Holy Trinity. I felt like I was going to get bullied a lot, and I did actually get bullied a lot. I used to have to go by the dean when school was over so the other students could leave the compound and the path is clear, where I would normally leave and go home,” said Jahmar.

“When I got in grade eight I repeated, and I was going to be in a class with new students, so I said it was my time to shine and my time to actually focus, and I did what it took,” he recalled.

Through the help of his principal, he got more involved in school activities to create a more positive atmosphere on the campus. His involvement in school also became a good way to cope and keep his mind off his medical condition.

Jahmar said he became a monitor by the eighth grade, transitioning to student’s council representative the following year, and the student’s council public relations officer in grade 10 as the designated photographer. He added that he continued his public relations role in grade 11, which was when he was interviewed to be the deputy head boy for the school.

“From then until now, every time something is keeping at the school and they want photographs, I am the first person they call. If I am at home, they are calling me to let me know that I have to come to school to take photos,” he said laughing.

His mother, Kerry-Ann Whyte, shared that, as a single parent, it was often difficult for her to keep up with visits to the Sickle Cell Unit, the cost of health care, and tend to her other four children, especially when Jahmar was younger and his condition was more severe.

She shared that her first child has the sickle cell trait, but Jahmar, her fourth child, is the only one who has the full-blown disease.

“For now I am okay. I thank God that he hasn’t been in critical condition for awhile. Sometimes I will hear him say that his joints hurt and he’s not feeling too well, but it’s much better now,” Whyte told the Sunday Observer.

She shared that when she first received the news about his condition, she was preparing for the worst, but through God and support from family members she’s managed to stand strong and shoulder the obstacles that came.

Like Jahmar, Whyte said that she is optimistic that her son will live a long and healthy life.

“He’s not the only one who gets a time period, there are others who get a time period and live beyond that time period, so it’s not what man says, it’s what God says. Nobody knows their death date,” said Whyte.

Seventeen-year-old Jahmar James is living with sickle cell anaemia.

A detailed shot of sickle-shaped red blood cells, illustrating the abnormal shape characteristic of sickle cell anaemia.