|Published: 9:19 AM, 01/22/2014
||Last updated: 9:56 AM, 01/22/2014
Author: Tommy Millsaps
Source: The Monroe County Advocate
SWEETWATER-A brave little boy has
lost his battle with a rare disease, but his courage and fighting spirit will live on.
The Advocate & Democrat first told you about Trй and and his younger
brother, Bryson Johnson, last June.
The little boys were fighting
a rare genetic syndrome called IPEX. IPEX (Immune dysregulation, Polyendocrinopathy, Enteropathy,
X-linked) syndrome is characterized by systemic autoimmunity, typically beginning in the first year
Without aggressive immunosuppression or bone marrow
transplantation, the majority of affected males die within the first one to two years of life from
metabolic derangements or sepsis; a few with a milder phenotype have survived into the second or
third decade of life.
Trй died Saturday at the age of 3. He had
received a bone marrow transplant and had done well for weeks until getting sicker in the past
month, family friends told The Advocate & Democrat. Trй has often been the sickest of the two
There will be a candlelight ceremony for Trй
tonight (Wednesday, Jan. 22) in Sweetwater.
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