Reggae music filled the air May 31 at the Southfield Parks and Recreation Department, 26000 Evergreen Road, where community members, medical professionals and local politicians met in support of Southfield resident Rose Ibokette-Perkins’ efforts to create a law that would hopefully save newborns from a deadly genetic disease.
About 100 people attended the event, where Ibokette-Perkins spoke on her advocacy for a new law, called “Samuel’s Law”— named after her late son, Samuel King— that would require all newborn babies in state of Michigan to be screened for adrenoleukodystrophy.
According to the Stop ALD Foundation’s website, the disease affects one in 18,000 people, most of them male. It is a disorder of the brain that destroys myelin, the protective sheath around the brain’s neurons that allow people to think and control muscles. Commonly, it begins to appear in boys ages 4-10, and it starts with memory loss. Eventually, ALD progresses into blindness, deafness, seizures and memory loss.
The website states that there are currently only two treatments for ALD: Lorenzo’s oil — a combination of two fats extracted from olive oil and rapeseed oil — and a bone marrow transplant. Because King’s condition of ALD had progressed so significantly, he was not a candidate for a bone marrow transplant, and he passed away in June 2013 at age 11.
Dr. Nadia Tremonti, who was one of King’s doctors and is currently a medical director at Wayne State University, medical director for palliative care at the Children’s Hospital of Michigan and medical director for the Kaleidoscope Kids Hospice at Henry Ford Health System, said a law requiring newborns to be screened for the disease would be the strongest effort to try to stop it.
Tremonti said that the fee to test newborns for the disease is a costly one, not typically covered by most medical insurance.
“I believe that the stronger approach in these types of diseases is to change the newborn screening law,” Tremonti said.
Perkins said that only one state, New York, has a similar law, called “Aidan’s Law.” State Rep. Jeremy Moss and a representative from Congresswoman Brenda Lawrence’s office, Jeremy Kaplan, who is the constituent outreach coordinator for Oakland County, spoke on their support of the movement.
“A family that goes through tragedy like this has the decision of what to do next. What does the legacy look like? Despite Sam’s short life on this Earth, that short life is going to save so many more lives from here on forward if we can get this newborn screening legislation passed in Lansing,” Moss said. “With a commitment from my office and the commitment from Congresswoman Brenda Lawrence’s office, we wholeheartedly support Rose and her family and this community’s effort to get newborn screening for ALD as a requirement here in the state of Michigan.”
“We’re not going anywhere until we achieve newborn screening for ALD,” Kaplan said.
Ibokette-Perkins’ daughter, Ima Gordon, launched a book at the event, “No Treatment-No Cure,” about ALD and Samuel’s life.
“The goal of the book is to raise awareness about the disease and to give hope to those who might think life is hard right now,” Gordon said. “It’s just to teach people to cherish your loved ones because life is short, and don’t wait until people die to show your appreciation for them.”
Ibokette-Perkins announced that she is launching a nonprofit organization, Samuel Elisha King Inc., to advocate for all states to screen newborns for ALD.
“I am truly honored for such a turnout,” Ibokette-Perkins said. “It shows me people care about my mission and the most important thing for me is to get the word out.”.
