In 2006, 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
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.