Teenager battles rare disease, told he might not live past 21
Sebastian Jno-Jules-Davis feels he has been given a death sentence by health care professionals, who say he will not live past his 21st birthday without proper, but costly attention.
And even if he lives past that age, they say, serious complications from syndactyly would hinder his ability to walk. But the 19-year-old second year management student at the University of the West Indies has heard this before.
He woke on his 15th birthday shouting praises to God at the top of his voice because he had been told he might not live to see that day.
Today, Davis, affectionately known as Bassie, uses his touching life story to inspire others.
Syndactyly is a condition where some or all of the fingers or toes are wholly or partly united, either naturally – as in web-footed animals – or as a malformation.
In sharing his story with Barbados TODAY last Saturday night during the intermission of a concert held at the Lecture Theatre 1 at the University of the West Indies to raise funds to assist with his medical bills, Davis spoke of the challenges he faces doing things that come naturally to most people
He walks with a cane and wears special shoes, and could hardly find the words to explain the complications caused by his condition.
“It’s is very complicated to understand and even more complicated to have to live with everyday. But what can I do? I can’t let this stop me from living my life. I have things I want to achieve in life. I just take one day and a time,” the young man assured.
Davis is seen as one of the miracle babies of the world. Doctors locally and overseas still cannot grasp how he is able to do certain things they predicted would have been impossible.
He was born prematurely and had to be hospitalized for a lengthy period, even as doctors remained unsure he would survive.
Nevertheless, as he has done countless times since, he defeated the odds and was able to go home.
“My body wasn’t reacting correctly to my surroundings and what’s not. I was always getting sick and always on medication. When I started to walk the feet was taking a toll on me and I had to be on medication for that pain.
“And certain doctors and professionals said ‘well a forecast we have is if he continues doing what he is doing then by [age] 15, 17’ I would be out. Fifteen came and I woke up that morning and screamed. Then 17 came and I was so happy. I kept noise in the house because I was so happy,” he recalled, his tone upbeat.
At one point during the interview Davis’ voice lowered. In a reflective mode, he spoke about how doctors were now saying that he would not live to see his 21st birthday without serious intervention because “my condition is getting worse”.
But the member of the Seventh Day Adventist Church said he was pretty sure he would prove these professionals wrong again, as he has done in the past.
Yet, he could not hide from the fact that his condition is taking a turn for the worse.
“I know it is,” he said clearly.
“It is like this. You wake up every morning and you don’t feel pain. You are able to get out of your bed and go into the kitchen or the shower.
“I get out by bed and I have to lie down and wait for my legs to start reacting so that I can get out of my bed. If it starts reacting that means I can feel it, and if I can feel it that means I feel pain,” he said.
A guitar played softly in the background as the young man spoke about how he gets up each morning and looks at his feet and tries his best to move them. He said he sees the signs that “time short for the legs.”
“I mean, my own body is telling me, ‘well look, the feet ain’t as they use to’. They weren’t perfect, but the best state that they were in they aren’t anymore.
“They are just going further and further. It is getting worse. I know that any moment in time I could wake up or even while walking that they could just give up on me,” Davis said, recalling one day at age 15 he remained in bed all day, unable to walk.
“That was the day I thought they were correct. I was saying, ‘Bassie this is the day walking done’. But then the next day I got the sensation and I was able to walk.
“From then I don’t take walking for granted. It has been happening more frequently now. The day will come and I will tackle it when that day comes,” he stated.
Davis accepts that he will never live a normal life, doing the things people his age do.
So, he is happy to sit on the sand and watch his friends play football, or show off their jumping skills.
It bothered him in the past, but not anymore.
“I just came to realize that I am able to do some things that someone who is normal won’t be able to do. For example, when I go to the hospital and talk to children who are sick and going through similar issues, they open up to me and I am able to help and talk to them,” the eloquent young man said.
“Yes my problem is a challenge to me sometimes but I am able to put it to use to help someone else. And I realize that there is someone worse off than you but have a better outlook on life than you.”
People are not always kind to him, David said. Some stare at him quizzically, others make unpleasant remarks, but he takes it all in stride.
“I just laugh at them now and personally, I don’t even take offence.”
Davis is currently in discussion with his doctors about having reconstructive surgery on his left leg for more even distribution of the pressure.
“The surgery, although it won’t solve all of the problems, it should make a lot of things easier. A lot of the pain which comes from the right leg would then sort of dissipate because the right leg would then be holding its own weight so to speak,” he explained.
The concert was organized by the Mission Prayz group.