The following is a press release from the office of Sen. Ed Meyer:
HARTFORD, CT – Senator Ed Meyer (D-Guilford) voiced his support today for Senate Bill 465, which will require all newborns be screened for Adrenoleukodystrophy (ALD), a devastating disease affecting the central nervous system. Jack and Jean Kelley, Branford residents and constituents of Senator Meyer’s, spoke in favor of the bill. They explained that their son Brian has lived with ALD for nearly two decades, and that a diagnosis at birth will help children with ALD avoid the most severe and life threatening symptoms associated with the disease.
“It is critically important that we ensure the health and safety of our children by screening for this devastating, but entirely treatable disease by identifying it near birth,” said Senator Meyer. “I am very thankful to the Kelleys for bringing this issue to my attention, and promise my full support in ensuring the passage of the bill.”
In addition to a bipartisan panel of legislators, several medical professionals attended the event to express their support. They explained that ALD affects an estimated one in every 20,000 boys, and can result in severe disability or even death if not treated. However, early identification and treatment can treat and even cure the disease before the first symptoms appear. ALD is a hereditary disease that manifests itself in boys in early childhood. The boys are born missing an enzyme, and its absence leads to the eventual destruction of Myelin in the body. Myelin allows for the conduction of impulses between the brain and other parts of the body. Without it, children rapidly lose their sight, speech, ambulation, and the ability to eat most food and liquids by mouth.
“We’re hoping to make an impact on the lives of other little boys moving forward,” said Jean Kelley who, along with her husband John, founded Brian’s Hope, an organization dedicated to promoting awareness of ALD and ensuring that future children do not suffer as their son has.
The Kelleys stressed that screening only costs $1.50 per child, but the savings in both medical bills and needless suffering, are immense. The legislature’s Public Health Committee recently held a public hearing on Senate Bill 465, and supporters hope that it will be voted out of committee soon. Connecticut would be one of the first states to pass this groundbreaking law, and both New Jersey and New York are considering similar proposals.
For more on the Kelley's story, check out this feature in the New Haven Register.