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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

A couple of days ago, Amari was admitted to Mount Hope Hospital, where the doctors found he had a Urinary Tract Infection (UTI). He has been on IV antibiotics for the time being and also has his usual monthly intravenous immunoglobulin (IVIg) transfusion scheduled for Friday. Although he is in some discomfort, he is in good spirits and seems to be recovering. As you can see from the picture he was doing some reading yesterday. The doctors indicated that we should be able to go home on Friday after his IVIg transfusion, so we are keeping the faith. Please keep Amari in your thoughts and prayers and keep sharing the links and videos. Thanks again for all the support thus far!