Elisa and Bob Seeger are pushing the New York Senate to pass "Aidan's Law" in honor of their son, 7 year-old Aidan Seeger, who passed away from a rare brain disease in April of 2012.
Aidan was diagnoses with ALD (Adrenoleukodystrophy) in June 2011. ALD is a genetic condition which causes in the buildup of very-long-chain fatty acids in the nervous system, adrenal gland, and testes. The disease affects approximately 1 in every 17,900 adolescent boys each year and is, in most cases, fatal. The fatality rate is partially due to misdiagnosis and failure of the patient to get proper treatment. When left untreated ALD sufferers can go into a vegetative state prior to death.
According to CBS New York, the progression of ALD can be stopped with treatment if treatment is received prior to the appearance of symptoms. Since early detection is the key in effectively treating ALD, the Seegers are fighting to make testing for ALD in all newborn children in New York mandatory.
Although when administered as a separate test, the ALD screening test costs between $200 and $1200, depending on the age of the child, when administered as part of a routine genetic testing, the cost falls dramatically to around $1.50. New York currently tests for 51 diseases as part of the routine tests administered to newborns prior to leaving the hospital.
The Center for Disease Control (CDC) recommends that all babies born in a hospital be screened prior to leaving. Parents who do not have their babies in a hospital or in a hospital that does not offer routine screenings are encouraged to take the infant to a clinic for screening within a few days of birth.
"Aidan's Law", if passed, would require that all hospitals in the state of New York add ALD to the required testing infants receive. Aidan's mother, Elisa, told NY Daily News: "My son lived his whole seventh year, 10 months, in the hospital. I don't want to hear of another boy suffering."
Once Aidan was finally diagnosed with ALD, he underwent a bone-marrow transplant, a procedure that has shown to be effective in patients that are diagnosed and treated early enough in the disease. Sadly though, Aidan's condition had already progressed to point the transplant was not able to save him.
Amber Salzman, president of the Stop ALD Foundation, stated: "This really will be a public win if you think of it in terms of what it costs to screen for ALD versus what it costs to treat."Kennedy Krieger Institute doctors agree, saying the estimated $1.50 cost per child compared to $375,000 cost per year to treat the disease in New York is "a drop in the bucket."
New York State Sen. Martin Golden, co-sponsor of Aidan’s Law, told CBS New York: “This is one that I will fight to all extremes to make that it’s passed. This is just, plain and simple, the right thing to do."
Elisa could not save her son, but she hopes his suffering and death can help prevent other children and families from experiencing the same tragedy and heartache. “I just want to get the test added. Everyday we wait is another child that will be born with this disease. You know, they’ll be fine until one day you’ll wake up and get this horrible diagnosis,” she said. “It doesn’t have to happen. I wish I could have done something more for him, but my goal right now, like I said is just to help other families. My only hope right now is to not have another child suffer that way.”
A petition encouraging New York legislatures to pass "Aidan's Law" has been set up at the Care2 petition site.