Friday, March 23, 2007

Mom and I met with a man from Children's Hospital the other day and she explained to him how there are only about 1,000 known cases of Fanconi anemia in the world. Here is a newspaper story about a boy way far away who has FA. His daddy is from Saudan, and they have terrible things going on in that country.

His mom is from Taiwan and that is where he is going to have his transplant. Mommy is leaving for China in a few days. That is right next to Taiwan. It is on the other side of the world. Joe keeps asking her not to go 'cause he is going to miss her so much. She is going to have a great time and I think Joe will really enjoy all of the pictures she will take and the presents she'll bring back.

Sudanese boy with anemia waiting for marrow transplant

RAY OF HOPE: A couple who learned of Elnour Eltayeb's illness while in Sudan decided to raise funds for him to receive treatment in Taichung

By Hsieh Feng-chiu
Sunday, Mar 11, 2007, Page 2

A five-year-old Sudanese boy suffering from Fanconi Anemia experienced a pleasant Lunar New Year in central Taiwan last month thanks to the efforts of a Taiwanese woman and her Sudanese husband.

The boy, Elnour Eltayeb, who has eight brothers and sisters, was diagnosed with Fanconi Anemia at the age of two.


One of Elnour's older brothers died of the same disease, which is genetic, several years ago.
Elnour's only chance for survival is to have a bone marrow transplant.

Tsai Yi-man (蔡苡蔓) and her husband heard about the boy's illness when they visited Sudan last year and decided to help him.


After the couple returned to Taiwan, they contacted China Medical University Hospital in Taichung for medical advice and assistance.

The boy, his parents, an older brother, and a younger sister traveled to Taiwan late last year, staying for free in dormitory at the Taichung hospital.

While in Taichung, the health of Elnour's older brother, who is diagnosed with the same disease, unexpectedly took a turn for the worse and put him in critical condition.


The brother received a bone marrow transplant over a month ago.

Medical bills have as a result doubled from NT$3 million to NT$6 million, but the family has only managed to raise half that sum.

Elnour's doctor, Wu Kang-hsi (巫康熙), said that the boy's condition was currently not critical, which disqualified him for an immediate transplant.

The hospital is monitoring his condition.


To cheer the family up, the hospital's deputy superintendent Peng Ching-tien (彭慶添) has encouraged them to participate in activities organized by the Taiwan Thalassaemia Association, which provides support to people with Thalassaemia -- a kind of anemia -- and their familes.

Chen Li-ming (陳立明), who is the association's chairman, took the family to a restaurant to celebrate the Lunar New Year together.

At the dinner she gave Elnour a red envelope -- traditional during the holiday -- as a symbol for luck and a wish for good health from the people of Taiwan.

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