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Indeed, it's not an easy road - as our Courtney Weatherburne found out when she met with two sickle cell patients - a 9 year old boy from Punta Gorda and an 18 year old girl from Belize City. Theirs is a story of struggle and perseverance. Here is her special feature on sickle cell disease.

Courtney Weatherburne reporting
It's hard to get Orlando off his tablet. Every Saturday morning he sits beside his grandmother and cousins. Head lowered, eyes fixed on the screen and thumbs poised and ready for the next move, all this while his mom is busy in the kitchen making lunch.

That's the usual laid back weekend routine at the Gillett's residence in Forest Home, Punta Gorda. But in just a second - that calm can be shattered by panic and Orlando's wails of pain.

Orlando was a year old when he was diagnosed with sickle cell anemia. His mother, Rockel Romero saw signs of sickness from birth but she simply didn't know what was wrong with her baby.

Rockel Romero, Mother
"He started off at the age of like 3 months so the symptoms were like swollen hands, feet and stomach but I didn't realize at first that it was sickle cell because never in my mind I thought of that but I took him several times to hospital to see what was the problem and he was like that for like 3 months and on the 6th month of his birth that is when they did a blood test here in PG but apparently the test came back with a different symptoms. The diagnosis the doctor told me he saw on the result was rheumatoid fever."

"Finally at the age of 1 he was admitted in the hospital here in PG and a doctor that was seeing us came to me and said what I was explaining to him that he has been going through for the last couple months, he said to him it looks like sickle cell, if I have ever heard of sickle cell and I said no I have no idea what it is, or what is sickle cell or what that could have been."

Sickle Cell is a genetic blood disorder. It's a condition in which there aren't enough healthy red blood cells to carry adequate oxygen throughout the body.

Dr. Cecilio Eck, Head of Pediatrics, K.H.M.H.
"What happens in me and you is that a normal red blood cell, those are the cell that collect oxygen via our lungs, take it through the blood vessels and deposits this oxygen to the tissues that need it."

"With sickle cell disease what happens with people born with this illness is that the red blood cell is very frail, it breaks up easier, depending on which type you have would determine how long they last but we do know they get broken up much easier and they last much fewer days than the 120. The normal red blood cells look like a balloon filled with water, and you could imagine a balloon filled with water like an octopus could go through a very tiny space and come out on the other end. With the sickle cell disease under specific circumstances if a patient has fever, if a patient is going in high altitudes, if they get stressed, if they get dehydrated What happens is that the sickle cell, the balloon or the octopus sticks to each other and they can't pass through the tiny holes to provide oxygen to the tissue."

And that oxygen deprivation leads to what is called a crisis.

Courtney Weatherburne, reporter
"So describe what a crisis is like and how often he gets these episodes?"

Rockel Romero, Mother
"The crisis is never an easy pain for us or for him because only he knows what he is going through and as a mother I can say, he is the one feeling it but as a mother you feel the same for your child you know."

"At night time it would happen the most, 11:00 or 12:00 he would just get up and start crying and say mom my stomach is hurting."

"Whenever he is in that pain, he won't be able to sit, you would have to put him to lay down and then picking him up you can't because his entire body would be paining."

"One thing Dr. Eck taught me was to always look at his hair because the hair changes, it gets a red color and he says whenever the hair gets a red color it is because he is close to getting a crisis so that is when I would get prepared."

But nothing could have really prepared Romero for those long nights, even weeks in the hospital with Orlando on IV and medication - his little body trying to cope with all the pain and complications. And it's gotten worse over the years as Orlando now has an enlarged heart due to the sickle cell disease.

Like Orlando, 18 year old SCA 4th former Jasmine Ramclam also has to endure a number of health complications. She was diagnosed with sickle cell when she was three years old. But it's only when she got older that her condition intensified. So much so that Jasmine had to have her overworked spleen removed because it was only making her sicker. But she still kept having those awful episodes.

Mariette Robateau, Mother
"Her crisis would normally come in the morning at 2:00, 3:00 in the morning a time that you don't want to get up and then she would come knocking at my door as soon as I hear the knock my heart start race because I know I have to go."

Jasmine Ramclam, Sickle Cell Patient
"I can feel when I will get my crisis like from days before I can feel my body running down."

"And I will feel like a strike and when I feel the strike, sometimes I feel it in my back , when I feel the strike like a few minutes after like the pain just come over my entire body and then my body get tight, tight, tight, it is hard to breathe, I pain everywhere so it is difficult."

It is also very difficult for Mariette Robateau to see her child suffering.

Mariette Robateau, Mother
"Well being a police officer it is very hard because we would go 3 days without sleeping...crying Crying."

But apart from the physical pain, it also affects Jasmine's social life.

Jasmine Ramclam, Sickle Cell Patient
"Well it has affected me like it made me like, like I feel like I am not a normal kid because I can't do what other kids can do and sometimes that bothers me. I hate seeing people do things that I can't do and it frustrates me."

Courtney Weatherburne
"What are some of those things you wish you would be able to do and you see your friends do?"

Jasmine Ramclam, Sickle Cell Patient
"Like for example I can't be in the sun long so for example carnival, if I do go out I have to watch myself, I have to be under a tent, I can't have as much fun as others and you know Easter time people go to swim and I can't go to swim because most of the time when I go in the water I get sick and after end up in the hospital."

This disease has also affected Orlando's childhood as well.

Rockel Romero, Mother
"I just need to keep him very much hydrated, he can't play, too much running, or too much activities so basically it is just like he would be sitting around if we are outside in the yard sitting or if he sees the other kids he would go out and play he wants to but I am afraid to send him due to his weight and size the doctors are afraid he could get hurt."

But there is hope for Orlando and Jasmine and other suffering from this disease. According to Dr. Eck, although many have died from this sickness, there are persons who live long lives.

Dr. Cecilio Eck, Head of Pediatrics, K.H.M.H.
"So again data coming out of Jamaica are they presented us with a 72 year old man who is a farmer in the hills he has full blown sickle cell disease."

"And he is fine, he goes to work and he lives in high altitudes so he has all the risk factors for getting many complications and he is fine so could live quite alright."

Rockel Romero is trying to keep that hope and positivity alive for her Orlando and hopefully for others suffering from this disease through social media outreach.

Rockel Romero, Mother
"Slowly and gradually I am getting one, one messaging me and ask me how it is going and they explain what they are going through and I am going through the same thing and maybe we can meet one day and we can sit, and with the patient that has sickle cell and I can have my son with me and we share what we went through, what we are going through and what we will be looking forward to go through."

So for now, Orlando gets to put down the tablet, and kick some ball - taking a little risk, for the reward of being a normal kid.

And Jasmine will continue studying hard and working on her dream of being a social worker - while enjoying the little pleasures of just hanging out with her close friends.

Jasmine Ramclam, Sickle Cell Patient
"No matter what never give up and try your best and like appreciate life, because life is good even though we have these many complications, I still appreciate life because many people are just dying, they get knock down, we have the sickness and we are still living so as long as you live just appreciate life."

Hard-won wisdom we could all use.

If you have a child or a family member with sickle cell kindly "like" Romero's Sickle Cell Association of Belize facebook page or reach out to her with your story.

Dr. Elsworth Grant from the Dangriga Cancer Center has helped a number of sickle cell patients through consultations and affordable medication from the US.