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Spencer Barsh's dad Steve writes:
Spencer was born in December 1999. At age one, he was diagnosed as having ALD (Adrenoleukodystrophy),
an inherited disorder in which a protein that normally helps metabolize
very long-chain fatty acids is defective. The result is progressive
damage to the brain and adrenal glands leading to
eventual death. ALD was profiled in the movie "Lorenzo's Oil".
An unrelated cord blood or bone marrow transplant is the only known
cure for this disease.
Spencer was asymptomatic at the time he
was diagnosed but was checked for ALD immediately after his
cousin was found to have this devastating neuro-degenerative disorder.
It was too late to save his cousin and we were told
that Spencer's prospects were also poor. In February 2002, when just
two years old, Spencer had an MRI that showed cerebral changes were
beginning to develop. We decided to move quickly to transplant and we decided to look for an unrelated cord blood transplant since they could
not find a good bone marrow match and were encouraged by the lower risk of graft
vs. host disease.
Spencer was admitted to Duke University Hospital in
Durham, NC, on April 9, 2002, and got his transplant on April 19,
2002. He was fully engrafted in less than a month, and his transplant
course and recovery were, relatively speaking, smooth.
Today, Spencer is now four years post-transplant, and is doing extremely well. Earlier damage seen on
a pre-transplant MRI appears to be resolving. Today, Spencer is
a healthy, normal, soon-to-be seven-year-old. If you
met him, you'd never guess what he had been through and what awaited him without his transplant.
NOTE: The StopALD Foundation takes an entrepreneurial approach to Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN) therapy development, awareness and prevention. Spencer's dad, Steve Barsh, serves as the Foundation's Vice President [steve@stopald.org]. For more information, please visit www.stopald.org. |
