Fighting for his life
Three-year-old Ajani Grazette is like any other infant –– cute and loving, playful and daring. He loves horse racing and singing –– especially the song, Why Worry When You Can Pray.
Prayer is very much at the centre of Ajani’s short life. He has already undergone two surgeries and has been hospitalized four times.
Ajani is one of three boys in Barbados diagnosed with the rare medical condition cystic fibrosis.
“Cystic fibrosis is a life-threatening disease caused by a defective gene and it creates a sticky mucus that affects the lungs and internal organs. It is a disease that affects the lungs, the reproductive organs, the digestive organs. There are a lot of areas that it affects. Some people looking at it from the outside easily assume it’s asthma; but it is far worse than asthma.
“The body produces an unusual amount of thick mucus and that mucus attracts bacteria,” explains Cystic Fibrosis Foundation president Michael Turton.
Ajani’s mum Andrea Brathwaite told Health TODAY it was a tough disease to handle especially since there were no specialists in Barbados to treat the condition, which has been taking a toll on little Ajani.
It was back in April that she got the dreaded diagnosis after months of trying to figure out why her son was always sick.
“When he was five months [old], while preparing to go on an overseas trip at Christmas, he came down with a cold. When I took him to the doctor, the doctor said, ‘He’s wheezing; he is going to become asthmatic’.
“He was always sick; he was hospitalized with a chest infection in 2012 and then in 2013. He kept getting colds and eventually he was diagnosed with asthma.
“He was on a lot of antibiotics and at one point I thought for such a young child he gets too much medication, and I always wondered why he is on so much medication and nothing was working.”
Ajani subsequently developed nasal polyps, which are teardrop-shaped growths that block the nose making it difficult to breathe.
Andrea says Ajani’s breathing sounded like he was choking and snoring at the same time.
“So his paediatrician referred the case to an ENT [Eear, nose, throat] specialist. She said the only way you would find a child with polyps in his nose is if he has cystic fibrosis.”
Andrea had never heard about the disease, which is genetic and is most common among Caucasians and is hardly ever found in the Caribbean. She is not aware of anyone in her family with cystic fibrosis.
“For me it was something new. I had no idea what it was. I went to work and I googled everything I could find on cystic fibrosis.”
“It’s hard, it’s very hard, it’s stressful, but I can’t give up. I have to continue to fight,” she said.
Andrea explained it was a 24/7 job caring for Ajani who was not yet on medication.
“He catches the cold every month; if he gets a cold this week, he battles a cold the next week. He may have a good month but soon after he will get a cold.
“He eats a lot because it affects his digestive system and he cannot hold his stool like normal children. As soon as he eats, he stools; and that is a big problem, because right now he is in school and because of the length of the walk from the classroom to the bathroom, sometimes he doesn’t make it on time. So I often have to leave work and go for him when he messes himself, and that is one of the biggest challenges I have right now.”
Andrea says there have also been “close calls” which are scary to deal with.
“On one occasion, he had just returned home from the hospital on Saturday, and on the Sunday I was cleaning, he was eating, and he came to me and said, ‘Mummy’ and then he collapsed and went unresponsive. I had to keep slapping him but there was no response. The drive to the hospital was harrowing and I said, ‘Lord don’t do this to me’ all the way because I had a miscarriage before him. Five minutes before we got to the hospital, he got up but he was hospitalized again. It was horrible.”
There is no cure for cystic fibrosis but there have been significant improvements in treatment which is a must for patients. A child diagnosed with the disease can live up to seven years without treatment while a patient who receives treatment can survive up to age 35. But the cost of medication to treat cystic fibrosis is prohibitive.
“There are two such medications –– one called Pulmozine and a box [costs] US$5,000 and it is only for 30 days. The Tobramycin is US$7,000 and that is also for 30 days, but you can use it for one month and then the next month you are off it.
“There’s also the enzymes they have to take because the body does not break down the foods out of the pancreas; it is blocked because of the thick mucus.
“There’s an enzyme called Creon 12, and with every meal that person or that child has to take that Creon 12. These are two capsules to get that food digested. It is a challenge for parents because children have to take the medication twice –– mornings and at nights.”
The Barbados Cystic Foundation is working with Andrea, who is now attempting to raise BDS$20,000 to take Ajani, who has no insurance, next February to the United States where he is expected to undergo the SWEAT test to ascertain the treatment he will need.
“I am doing everything possible. I am holding a fish fry on November 29, I am planning a picnic. I will also be holding a raffle –– anything I can do to raise some funds.
“I have to fight for him. I can’t give up,” said Andrea who has never questioned why her son developed the rare disease.
While she wishes that the condition would go away, she says her main focus is ensuring that he gets the necessary medication.
“ I know he will get better; my faith is strong and I pray a lot,” she said looking proudly at Ajani.
(Next week we’ll tell you more about the work of the Cystic Fibrosis Foundation and we’ll hear from another family living with the disease.)