SOUTHFIELD — State Representative Jeremy Moss (D-Southfield) and Congresswoman Brenda Lawrence (D-Southfield) held a press conference today to honor Rose Ibokette-Perkins, a local mother who became a health care activist after she lost her son to adrenoleukodystrophy (ALD), a deadly genetic disease. Ibokette-Perkins successfully sought to add screening for the disease to the panel of more than 50 disorders and hearing loss that all Michigan newborns are screened for.
“While nothing can remove the pain and sorrow of Ms. Ibokette-Perkins’ loss, I’m heartened that this screening will mean parents get the information they need to provide their children with the best care possible,” Rep. Moss said. “I can’t thank Ms. Ibokette-Perkins enough for her tireless efforts to help other parents, even while she was grieving such a momentous loss of her own.”
ALD, which affects as many as one in every 18,000 newborns, causes damage to the insulating envelope of myelin that protects the body’s nervous system. As a result, affected people may suffer seizures, hyperactivity, difficulty speaking and hearing and other problems. In some cases, it can result in a vegetative state and death. The 1992 film “Lorenzo’s Oil” featured one family’s search for a treatment for ALD.
Following her son’s death at the age of 11 in 2013, Ibokette-Perkins began a campaign to see ALD screening added to the newborn panel of testing in Michigan. The Newborn Screening Quality Assurance Advisory Committee subsequently recommended adding screening for ALD to the panel, which was approved by the director of Michigan’s Department of Health and Human Services and the Legislature.