Rose Ibokette-Perkins is glad that no other mother has to experience what she went through.
After Ibokette-Perkins’ son, Samuel King, lost his life at age 13 to a deadly genetic disease called adrenoleukodystrophy, she sprang into action.
Ibokette-Perkins started a movement called Samuel’s Law to advocate for the disease to be added to the federal Recommended Uniform Screening Panel by the U.S. Department of Health and Human Services, as well as Michigan’s Newborn Screening Panel.
“I couldn’t live to see another mother, another family — siblings — suffer the tragedy that we are going through. Something needed to be done. ALD is cruel enough, but the fact that a child cannot even stand a chance for any available treatment … is like giving a child a death sentence. That’s what happened to Sam.”
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 said there are currently only two treatments for ALD: Lorenzo’s oil — a combination of two fats extracted from olive oil and rapeseed oil — and 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.
The Southfield mom enlisted the help of U.S. Rep. Brenda Lawrence and state Rep. Jeremy Moss to get the ball rolling on the movement.
Last May, Ibokette-Perkins hosted a rally for Samuel’s Law at the Southfield Parks and Recreation Department, on Evergreen Road, to boost awareness for the disease.
Lawrence and Moss met June 30 with Ibokette-Perkins and representatives of Providence-Providence Park Hospital in Southfield to announce that Ibokette-Perkins’ efforts were successful.
Joe Hurshe, president of Providence-Providence Park Hospital, shared a few remarks at the conference.
Dr. Betty Go, of Providence’s Neonatal Intensive Care Unit, said ALD is one of 50 tests newborns will be screened for within 24 hours of birth.
“Every baby deserves a chance. That’s why we’re all here,” Go said.
Lawrence said Ibokette-Perkins was one of the first people to come into her office after Lawrence was elected to U.S. Congress.
“I want you to make no mistake that testing newborns for ALD will save lives,” Lawrence said. “No parent should have to watch their child die, and no child should have to suffer the way Samuel did.”
Moss said that Samuel’s Law will help save lives.
“Those short 13 years of life have great meaning now, because Samuel’s short time on this Earth will save lives,” Moss said. “I believe Samuel was put here for a reason: to bring awareness that this disease exists, and now as a result, we’re now aware, the media is aware and medical professionals will be more aware of this disease to make sure we catch it earlier, find new treatment options and reduce fatalities.”
According to the U.S. Department of Health and Human Services website, the RUSP is a list of disorders that are screened for at birth.
LeMia Jenkins, press secretary for Lawrence’s office, said the U.S. Department of Health and Human Services has added ALD to the RUSP, recommending that all states test for the disease. Recommendation for an addition to the list does not require federal legislation, she said.
After that, the recommendation went to the state level. Once the director of the Michigan Department of Health and Human Services approved the recommendation to add ALD to Michigan’s Newborn Screening Panel, it went to the state Legislature for approval.
“Because the state Legislature did not hold a vote on the recommendation within 45 days, the addition is automatically approved without a vote, per state law — the method in which the state Legislature happens to use in these cases rather than voting,” Jenkins explained in an email.
The resolution, known as Samuel’s Law, was signed by Gov. Rick Snyder, Jenkins said in an email.
“Samuel’s Law is a celebration of hope, peace and help to our future children and families. Samuel’s Law is going to save countless lives. Samuel’s Law will allow me, although I lost one son, but in the future, I’m going to be gaining more sons,” Ibokette-Perkins said.
