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Fighting for his life

Health-Today-blockThree-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.

Michael Turton, president of the Cystic Fibrosis Foundation of Barbados.

Michael Turton, president of the Cystic Fibrosis Foundation of Barbados.

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.

Ajani has been hospitalized four times.

Ajani has been hospitalized four times.

“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.)

49 Responses to Fighting for his life

  1. Sonia Rastaqueen Bryan
    Sonia Rastaqueen Bryan November 15, 2014 at 10:17 am

    Bless him

  2. Cheryl Broughton
    Cheryl Broughton November 15, 2014 at 10:41 am


  3. Pauline Lowe
    Pauline Lowe November 15, 2014 at 10:44 am

    Saying some prayers for him

  4. Sandy Hinkson
    Sandy Hinkson November 15, 2014 at 10:48 am

    May God cover him n his blood

  5. Merisa Jemmott
    Merisa Jemmott November 15, 2014 at 10:51 am

    Heal him Lord an cover him in ur blood amen

  6. Leeann Grung
    Leeann Grung November 15, 2014 at 10:58 am

    My prayers are with you….may God give you both an awesome testimony

  7. Leeann Grung
    Leeann Grung November 15, 2014 at 10:58 am

    My prayers are with you….may God give you both an awesome testimony

  8. Jeffrey Boyce
    Jeffrey Boyce November 15, 2014 at 10:59 am

    Ajani I just want to decree and declare the healing power of God in your life be heal in the power of Jesus mighty name.

  9. Sherriann Davis
    Sherriann Davis November 15, 2014 at 11:06 am

    I can’t begin to imagine the battle she’s going through. I’m praying for her and her son and hoping that she will receive the necessary funds she needs in order for him to obtain treatment.

  10. Tamika Sheena Harpee
    Tamika Sheena Harpee November 15, 2014 at 11:15 am

    She is very strong, God richiest blessing on you and your son, there is power I the blood

  11. Tamika Sheena Harpee
    Tamika Sheena Harpee November 15, 2014 at 11:15 am

    She is very strong, God richiest blessing on you and your son, there is power I the blood

  12. Ingrid Ibrahim
    Ingrid Ibrahim November 15, 2014 at 11:16 am

    Lord hear pray in mercy have mercy on Ajani I trust you Lord.

  13. Kei Dyer
    Kei Dyer November 15, 2014 at 11:23 am

    I’ll be praying for u and this handsome little boy.

  14. Karie N Bryan
    Karie N Bryan November 15, 2014 at 11:29 am

    Dear lord hear my pray watch over this mother and child help them to over come their troubles and fears dear lord i trust that u will take them through we know u have the strength and power amen

  15. Sherry Ann Thankful
    Sherry Ann Thankful November 15, 2014 at 11:35 am

    My prayers are with you and your son

  16. Lucia Aniela Parris
    Lucia Aniela Parris November 15, 2014 at 12:30 pm

    I’m looking at the positive in all this — his mum is a tower of strength —as an onlooker I’m thankful that this child has been blessed with a mother like this, who is not begging for funds, but going above and beyond to plan events and raise the money through determination and faith… I too believe he will come out on top of this disease and you will be 3 times the woman you are now… May God be with ajani , his mum and his family.

  17. Randy Jeanmal Winter
    Randy Jeanmal Winter November 15, 2014 at 12:36 pm

    I pray that my god give this lil boy the strength to pull through and I rebuke this sickness in Jesus name may the lord bless u that u get the courage to help him in whatever area u can help him in Jesus name amen

  18. Natasha Best
    Natasha Best November 15, 2014 at 12:51 pm

    He is going to be good cuz you will see

  19. Sunny King
    Sunny King November 15, 2014 at 1:04 pm

    My prayers are with you and your adorable son you will draw strength from each other stay firm and unwaivering God hears all prayers

  20. Joy Waldron
    Joy Waldron November 15, 2014 at 1:16 pm

    Only who wear it knows it, wish you good luck with all you’re doing for your son, wish him better health also

  21. Beverly Gerber
    Beverly Gerber November 15, 2014 at 1:22 pm

    a BEAUTIFUL BOY ! God Bless

  22. Cheryl Alleyne-Brooks
    Cheryl Alleyne-Brooks November 15, 2014 at 1:23 pm


  23. wendell cox November 15, 2014 at 1:24 pm

    i wud be in bdos on dat date ur goin ta keep da fish fry … wud love info where it wud be keepin to com with my posse ta support da cause

  24. Erms Bajan
    Erms Bajan November 15, 2014 at 1:26 pm

    Bajans need to step up to stuff like.They have money to support cricket,every gala that comes the Oval, The crop over entertainment. And the list can go on.This kid need help and right now. We as Bajan can do it so let show our support. My prayers are with you and your son,

  25. Taofeek Adekunle Suleiman
    Taofeek Adekunle Suleiman November 15, 2014 at 1:43 pm

    Heavenly Father wil heil U of dis deadly illness you are in my prayer ajani

  26. Kell Zelia
    Kell Zelia November 15, 2014 at 1:43 pm

    Dear lord watch over this family and I will have them in my prays amen

  27. Norma Sobers
    Norma Sobers November 15, 2014 at 2:17 pm

    Cystic fibrosis you must leave Ajani body in the name of Jesus. I pleaded the blood of Jesus right now over him in the name of Jesus. Ajani by his strike you are heal. I also pray for his mum. Lord please give her peace and comfort. Help her to trust you more. Amen.

  28. Andrea Brathwaite
    Andrea Brathwaite November 15, 2014 at 2:26 pm

    Thanks so much from the bottom of my heart….overwhelmed right now.

  29. Michael Turton November 15, 2014 at 3:08 pm

    The Cystic Fibrosis Foundation of Barbados is holding a Gala Dinner at the Concorde Experience on February 28th to assist little Ajani and the two other boys living with this disease.
    We need all the support we can get as we are trying to raise 50,000. The Cystic Fibrosis Foundation of Barbados is a registered charity. Tickets are available at Wine World locations and online at http://www.Tixprocaribbean. org

  30. Aillan November 15, 2014 at 3:17 pm

    God sees and knows everything keep trusting him, my heart goes out to you, but my prayers are also with you. Keep up the fight and God will see you through

  31. Sweetsyrupy Bartlett
    Sweetsyrupy Bartlett November 15, 2014 at 3:54 pm

    May God See U Thru This

  32. Michael Turton November 15, 2014 at 4:21 pm

    The Cystic Fibrosis Foundation of Barbados has been building awareness of this disease and seeking financial assistance for the children living with this disease. There is a fund raising dinner schedule for February 28th 2015 at the Concord Experience. Visit our Facebook page. It is in our name.

    • Justice for All December 1, 2014 at 10:15 pm

      Try to have more events and less expensive. I would have loved to attend this event but the price is way too high. Plus i would have to get taxi to and from the north end.

      I’ll keep checking and when events are less expensive i definitely will support your cause. The entire cystic fibrosis members are in my prayers.

  33. Undine Mascoll
    Undine Mascoll November 15, 2014 at 6:31 pm

    Andrea my prayers goes out to you and your son,God answers prayers . Please give me a call

  34. Andrea Brathwaite
    Andrea Brathwaite November 15, 2014 at 6:45 pm

    Thanks Undine call me 271-8437.

  35. Melessia Arrindell
    Melessia Arrindell November 15, 2014 at 7:08 pm

    sorry to hear about your son keep the faith an keep praying i will pray as well

  36. Gail BajanQueen Mc
    Gail BajanQueen Mc November 15, 2014 at 8:22 pm

    He is Blessed no matter what. His Strength at that age should make many rethink what they fuss over.

  37. Jacqueline Cumberbatch
    Jacqueline Cumberbatch November 15, 2014 at 10:07 pm

    May the Lord heal his body

  38. Winslow Brome November 15, 2014 at 10:44 pm

    call me ,I am a nurse. I would like to help in any way I can

  39. Nicole Haynes
    Nicole Haynes November 16, 2014 at 1:58 am

    I pray u get well soon

  40. Thorne Glaston
    Thorne Glaston November 16, 2014 at 5:29 am

    My prays go out to u , your son …and all the Brathwaite family

  41. sandra best November 16, 2014 at 6:16 am

    Pray makes the darkest clouds withdraw dont stop praying for the lord is near he have done it for me he would do it for you I will remember you all in my praise trust God were u can’t trace him

  42. Kia Daniel
    Kia Daniel November 16, 2014 at 8:23 am

    My prayer gone out to u

  43. Blossom Babb
    Blossom Babb November 16, 2014 at 8:30 am

    I pray that he pulls tru its not easy having a sick child this i know for sure

  44. Cherise Rock November 16, 2014 at 9:17 am

    “Faith without works is dead”. All if these prayers are pretty useless if you don’t make a contribution. I will make contact with you Andrea Brathwaite.

  45. sulew November 27, 2014 at 4:05 am

    Totally agree Ms Rock.

  46. Debbie McCollin December 1, 2014 at 9:43 pm

    Father Lord by your stripes may he be healed in you only begotten son name and washed in his blood oh God. May you encamp your angels to war with the demons of Satan. All this father I ask in your name sake. Amen.

  47. Debbie McCollin December 1, 2014 at 9:47 pm

    God strength is present and perfect. So you’re so right. Why worry when you can pray

  48. Mike January 1, 2015 at 2:18 pm

    You can support little Ajani by supporting The Cystic Fibrosis Foundation of Barbados Fundraising Gala Dinner on February 28th at the Concorde Experience. Tickets available at Wine World locations and This event is in aid of children living with Cystic Fibrosis in Barbados.


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