Lenape High School freshman Taylor Kane, 14, does not feel nervous speaking to crowds.
It’s a positive quality to possess, as she recently testified before the state Senate Committee on Health, Human Services and Senior Citizens.
Taylor also trekked to Washington, D.C., to speak before an Advisory Committee of the Secretary of Health and Human Services, impassioned for her cause.
As a child, she lost her father to adrenoleukodystrophy (ALD), a rare brain disease that is hereditary.
Now, after lobbying to the Legislature, Sen. Stephen Sweeney introduced Bill №2137 in July to add ALD as a requirement in newborn screenings.
“While the committee voted unanimously in favor of the bill, it still has to pass the full Senate and then the Assembly before it can be signed into law,” said her mother, Diane Kane.
According to the National Institute of Neurological Disorders and Stroke, childhood on-set between the ages of 4 and 10 is the most severe form of ALD.
Bone marrow transplants have proven to be effective as a long-term treatment, said Diane.
“Once symptoms come on, then the bone marrow transplant won’t work,” she added, which is why early detection is key.
In her testimony, Taylor shared about the loss of her father, Jack, and pulled on the heartstrings of the committee members.
“I remember my dad playing with me all the time when I was really young. He was a perfect dad. But he suddenly started acting very strange. He was sleeping a lot and some days he couldn’t get out of bed to go to work until lunchtime. Other times, he wouldn’t come home for dinner, and he would say he didn’t remember where he had been,” she said in her prepared remarks. “It was scary. My dad went to the doctor and got a CAT Scan of his brain. That’s when he found out he had ALD.
“Within a few months, my dad began getting very confused. He lost his job. Then he lost his ability to walk, talk and swallow. He had to have surgery so the doctors could put a feeding tube in his stomach. My dad lived in a hospital bed in our dining room. Most of the time, he didn’t seem to know who we were. Sometimes, he tried to talk by using his fingers. One finger for ‘yes,’ and two for ‘no.’
“After a while, he didn’t understand the difference and would hold up three fingers, or just put the covers over his head. It was sad to see him suffering. My dad stayed in this condition, on hospice, for two more years. He died on Dec. 20, 2003, just after I started kindergarten. That was the saddest day of my life. My dad will always be my hero,” she said.
The committee members complimented her on her speech, which spanned to include her efforts to find a cure and specific details about ALD, saying she did a good job.
“I was just really happy when they told me that,” she said. “I wasn’t nervous because I feel comfortable talking in front of people.”
The disease affects one out of every 17,000 men.
“It’s not widely known, but it’s not really that rare,” said Diane.
Women can be carriers, but generally only have walking symptoms, she said.
To help raise awareness for the bill, Diane suggested, reach out to your local government, senator or assemblyman to ask for support.
“It is for a really good cause,” she said.
ALD Online Resources
Senate Bill №2137 can be viewed in full on http://www.njleg.state.nj.us/2012/Bills/S2500/2137_I1.HTM.
Learn more about adrenoleukodystrophy by visiting http://www.ninds.nih.gov/disorders/adrenoleukodystrophy/adrenoleukodystrophy.htm or http://www.kennedykrieger.org/.
View a previously written Mt. Laurel Sun article from 2010 on Taylor’s efforts at http://sj.sunne.ws/2010/08/18/in-her-dad’s-memory/.
Keep an eye out on www.run4ald.org, a 5K race held in Pennsauken in the spring and led by Taylor Kane.
To contact District 7 legislators, Senator Diane Allen, Assemblyman
Herb Conaway and Assemblyman
Troy Singleton, visit http://www.njleg.state.nj.us/members/DistrictLegislators.asp.