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'An Insatiable Desire to Live'

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by Natasha Coker- Jones

kwesi pix
Kwesi Aguillera; Photos by Revelino Guevara   

The Kwesi Aguillera story

Kwesi Aguillera is believing God for TT3.5 million dollars.

No, he doesn't want to buy a high rise condo in the West from which he could have his fill of sunsets. Neither does he care for the latest model luxury ride. Kwesi, 31, needs the money to buy himself a new pair of lungs and to get a bone marrow transplant - both of which will give him a decent shot at having a normal life.

You see Kwesi has Chronic granulomatous disease (CGD). If you've never heard of it, you're in good company. Neither did I before now, and I suspect that most people who come across the condition haven't. It's estimated that one in a million people have CGD and as far as Kwesi knows he's the only one in Trinidad and Tobago with it. CGD is a genetic disorder in which the immune system cells do not function properly. This makes the person with the disease prone to bacterial infections and this, unfortunately, is the story of his life.

I first learned about Kwesi from Malcolm, a long-time family friend. Malcolm is a member of Kwesi's church the Tunapuna Open Bible Church also called Church on the Way (which by the way will be throwing a bar-be-cue in their courtyard on August 6 to raise funds for Kwesi). Unfortunately, the request for a story highlighting Kwesi's case caught me between projects so I decided put it on hold. A few weeks later I got an email from the University of the West Indies (UWI) informing me of an upcoming fund raising bar-be-que for an Alum. It was Kwesi. I took it as a sign; a divine nudge. Make the call.

Kwesi's wife Teppany answered and we arranged to meet at the said bar-be-que on July 2 at UWI Staff Social Club on the St Augustine Campus. When you meet Kwesi for the first time the thing you'll probably notice are his tubes - the ones that help him breathe. The first thing I honed in on, however, were his eyes. They seemed incapable of missing anything. I would describe them as very contemplating, a tad melancholy even as if they'd seen the inside of one too many hospital rooms. (The actual figure of his hospital stays turns out to be at least 21. And that figure does not include private institutions.)

The portable oxygen system he wheels around with the ease of a carry-on, passes ambient air through a chemical that absorbs nitrogen and increases the amount of oxygen he receives. The breathing tubes and the apparatus have become an extension of him since August, 2010 when he was hospitalized with a bad infection - one that nearly killed him.

Kwesi grew up in Gasparillo with his mother, Laurel, father, Randolph, three sisters and a brother. He was told that from as early as three months he started displaying symptoms that something was wrong but it wasn't until he was 19 months that he was first hospitalized with pneumonia and gastro.

His mother Laurel, who he described as “the strongest person in my life” has been praying for him since birth.

“Everytime I would get sick she would be in constant prayer for me; always asking God to see me through and give me the strength I need to overcome.” Not surprising he credits her with laying the foundation of prayer, upon which he now stands.

“She has taught me well. Sometimes I don’t say enough about how greatly she has affected my life and made me into the person I am today,” he added.

Kwesi described the frustration of spending his “entire twenty something years” not knowing what condition was making him sick. Every year or two he would get an infection and end up with pneumonia that no one could explain. That became his normal.

"At a point they thought I had TB (Tuberculosis) and they sent me to Caura (Chest hospital) and did the test but it came back negative." Kwesi's symptoms continued to baffle doctors though he recalls a five-year stint where he was infection free.

In 2005 he got a bad case of pneumonia and ended up in ICU at the Eric Williams Medical Sciences Complex in Mt Hope.

"At that point they started to ask real questions to investigate. They looked back at my records and started to check specialists...It goes without saying that every time I went into hospital they took an AIDS [HIV] test and it came back negative."

In 2007 doctors thought they nailed it.

Kwesi was diagnosed with Pulmonary Fibrosis and Bronchiectasis. Both conditions impair one's ability to breathe. But he had one more Specialist to see. A local Immunologist by the name of Dr Michele Monteil was invited to consult on his case and her findings were different. Through a series of tests Dr Monteil was able to clinically diagnose that Kwesi had Chronic granulomatous disease, although a genetic test was never done simply because the technology is not available locally.

Apart from the need for the constant supply of oxygen, Kwesi has to be extra careful about infections. He was about to consume something given to him when his wife, Teppany, asked if he used the sanitizer. He said yes. Such things, he knows, are not optional.

Teppany has one of those ‘go-getter' personalities that any team - sporting or otherwise - would be lucky to

kwesi and tep
Kwesi and his wife Teppany

have. The couple met at UWI in the first semester of 2002 when Kwesi was pursuing a Masters degree in Computer Science after completing a double major in Computer Science and Management. She was reading for a BSc in Chemistry with a minor in Biochemistry and Environmental Biology.

"I met him and I didn't take him on until 2004," she said between fielding bar-be-que questions from the steady stream of patrons who'd showed up to support and were anxious to find out who to give what to. The two became a couple in December of that year and two months later in February 2005, Kwesi developed an infection that landed him in ICU. Things were so bad that he was put into a clinically induced coma.

Now let's be honest. Many, if not most women (and men) at that stage in a relationship, might have made a beeline for the door. Not Teppany.

"He has real drive, tenacity and a lot of ambition," she said of her husband. "Despite the fact that he was always in a hospital, that was a minor thing for me." Teppany, 29, saw that drive first-hand during Kwesi's time at UWI. Despite his illness, he never failed an exam. She couldn't say the same.

Teppany said she never doubted that this was the right person for her.

"That's the one thing I never doubted," she said. "Even some people said ‘yuh crazy, yuh husband will be sick'. Even one of his doctors said ‘Don't be surprised if you're a young widow'." She looks over at him. "He tells me he doesn't know what he did to deserve me, and I said it's the other way."

She continued: "Through all of this the average person would throw their hands in the air and just give up. He has, through this ordeal, shown that he doesn't want to give up. I believe I am blessed."

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Comments

2011-12-27
Ruth Mings

27th December, 2011 Kwesi, God has promised never to leave us or forsake us and of course you could attest to this. He WILL see you through.
2011-08-05
Desmond Phillips ND RMT BNH

God has a way of bringing people together -- He brought you two. He has a way of doing things -- He brought this story to my attention; God prepares a way before the experience -- He has prepared the Answer; God provides for the challenge -- He provides the solution; He has already supplied the Means. God has anointed me to ... deliver, to heal, to teach to set free. Remember stay focus on JESUS and call me.
2011-08-03
Euline Peters

Hang in there Kwesi. God would never bring you where He is not willing to lead the way. Just trust Him.

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