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"The Wu Family"
Chronology of Kyle Reuben Wu's ALD and his bone marrow transplant
- Born Dec. 30, 1987
- A huge boy lacked athletic skills; mind was quicker than body
- Walked on his toes often
- Diagnosed with Adrenoleukodystrophy (ALD) in 1997 by Dr. Trock due to severe
headaches
- Visited Kennedy Krieger Institute for ALD examination by Dr. Raymond and Dr.
Cox in December, 1997
- Had stiffness in his legs
- Visited Dr. Peters at Fairview University Medical Center (U. of Minnesota) in
July, 1998, bone marrow transplant recommended.
- On Lorenzo's Oil from December, 1997 to admission for transplant on Oct. 1, 1998.
Fatty acid levels became normal. Severity and frequency of headaches dropped.
- Bone marrow transplant date: Oct. 9, 1998, Fairview University Medical Center,
Minneapolis, MN
- Discharged first time from Fairview on Oct. 30, 1998 to Ronald McDonald House
in Minneapolis
- Graft vs. Host Disease (GVHD) in the eyes in Nov., 1998
- Developed Epstein Bar Virus Lymphoma in the lung in Jan., 1999
- Closing of tear ducts and partial closing of eye lids for dryness in Feb., 1999
- Returned home on April 1, 1999, medical care transferred to U. of Michigan
- EBV Lymphoma in the lung cleared in July, 1999. Rituximab chemo treatment stopped.
- GVH flare-ups throughout the summer, 1999
- Checked into Mott's Children's Hospital for the last time in Oct., 1999. Donor's
marrow did not grow much because of the chemo for EBV Lymphoma, no appetite, hopes dimmed
- Passed away on Nov. 22, 1999 from spreading of CMV (Cytomeglovirus).
- Buried at the Pleasant Valley Cemetery in Brighton Township, MI on Nov. 26, 1999
- Family met his donor in Dec., 1999
- See book for the entire journey
- Autopsy showed very little marrow engraftment and severe change in myelin of
the brain. Signs of GVH disease in many organs.
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