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Amari John - Wiskott-Aldrich Syndrome (WAS)

We call Amari our 'One in a Million Baby' because that is the probability of a baby being born with this particular disease. Amari is the first child in Trinidad & Tobago to be diagnosed with this medical condition. Wiskott-Aldrich Syndrome is a rare genetic immunodeficiency that keeps a child's immune system from functioning properly. It also makes it difficult for a child's bone marrow to produce platelets, making a child prone to bleeding, as well as other symptoms such as bloody stools and eczema.

When he is not experiencing discomfort from symptoms, Amari is a happy, smart little boy who loves playing with his sister and cousins, although he must always wear a helmet to protect him from hitting his head, which can result in a severe bleed. According to the Wiskott-Aldrich Foundation, children with this condition don't usually live past age 18 without a bone marrow transplant (BMT) or gene therapy. Amari's case is progressing and without a BMT he can succumb to a severe bleed or develop malignancies later in life. We have been coordinating with the Caribbean Bone Marrow Registry as well as the Wiskott-Aldrich Foundation to get Amari the help he needs.

Due to the unique nature of this disease, only a few hospitals are willing to take on Amari's case to perform the bone marrow transplant. Currently, two of our options are in the UK and Germany. A bone marrow transplant costs approximately £250,000 and we will also have to cover living expenses for about 6 to 8 months for the duration of the procedure. We are, however, getting some assistance from the Children's Life Fund (Trinidad & Tobago), who has already pledged to cover approximately £100,000 of the expenses. In order to save Amari's life we still need to raise additional funds in order to cover the remaining cost for the procedure. Please help us save Amari's life by donating and sharing.

Any contribution would be appreciated.

Thank you!

https://youtu.be/uCF36p5JcG8

Contributions can also be made to:

Republic Bank Ltd.
Account name: Amari John Appeal Fund
Account #: 180 037 564 331

#OneInAMillion #TeamAmari #WiskottAldrichSyndrome
  • Anonymous
    Anonymous donated $338
  • Anonymous
    Anonymous donated $135
  • Diedrian Reece
    Diedrian Reece donated $270
  • Anonymous
    Anonymous donated $135
  • Anonymous
    Anonymous donated $142

    God bless you. Speedy recovery in Jesus name

  • Anonymous
    Anonymous donated $675

    You sweet little boy, may God Bless you and your family so you can have a long healthy and happy life

  • Anonymous
    Anonymous donated $675

    All the best baby boy. Hope you get the treatment you need.

  • Anonymous
    Anonymous donated $338

    Praying for Amari's full recovery, InshaAllah.

  • Anonymous
    Anonymous donated $338
  • Anonymous
    Anonymous donated $135

    Such a sweetheart! I hope he gets the treatment and help he needs

  • #TBT Amari was born on 10th February, 2019 a healthy baby boy - he was discharged within 24hrs, so to us everything was fine. At 10 days old he was taken to the health center for blood streaked diarrhea. We were told that it can happen and it was possibly an anal fissure, but if it persists or gets worse to take him to emergency.
    A few days later, we went to Tobago to spend some time with his daddy and noticed that the bloody stools were getting worse, so we took him to Scarborough Hospital where he was then admitted because his blood platelets were at 5,000 (normal range is 150,000 - 400,000). The nurses ran blood tests, blood and urine cultures, blood film and ultrasounds; he was given platelet transfusions 3 times and IVIg transfusions twice. All they found was that he had almost no platelets. When they were able to get the platelets to a satisfactory level he was discharged, given iron and steroids (he got chunky lol) and was transferred to Mt. Hope Pediatric Hematology Clinic where more tests were run and he even got a bone marrow aspirate at only 3 months old.
    Amari was initially diagnosed with ITP (idiopathic thrombocytopenia purpura) because all other tests were not giving any answers. He started to develop eczema at about 6 months and started to attend a dermatology clinic where one of the doctors suggested to test for Wiskott-Aldrich Syndrome (WAS) even though they had never seen someone with it. We had to go privately to ship the samples for the test to be done in November/December 2019. As much as we were praying it was not WAS, Amari's diagnosis was confirmed. His doctors let us know that the only known cure is a bone marrow transplant (BMT) which is not done locally, as well as gene therapy, which is still in clinical trial stages (none currently available).
    Between his birth and present Amari has been hospitalized more than 8 times for infections and bleeding. We contacted several hospitals to get Amari transplanted ASAP and there was a glimmer of hope when a hospital in Munich Germany accepted him to do the BMT. We were even more hopeful when we received news that a few German donors were 90% matches for Amari, which is extremely rare for persons outside of immediate family.
    All that's left now is to raise the money for the procedure so that we can apply for a Visa and get Amari the help that he needs to survive. He is getting older and becoming a lot more active, so time is against us. It is very unlikely he will make it through his adult years without this procedure, so any assistance we can get is more than welcome. Thank you all for the continued support!

    #OneInAMillion #TeamAmari #WiskottAldrichSyndrome #AutoimmuneDisease #BoneMarrow #BoneMarrowTransplant #StemCell #StemCellTherapy #StemCellTransplant #ChildrensLifeFund #TrinidadAndTobago #TnT

Medical

Amari - One in a Million

by Rachael Seales
Created Aug 06, 2020 | Trinidad
$6,993 raised of $200,000 goal 3%
  • 18 Donations
  • No deadline
  • 0 Likes

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