It all started when Laura Quinn's father appeared depressed.
"He was exhausted and he wanted to do nothing but sleep all the time," Quinn said of her father, Russ.
In 1994, doctors diagnosed her father with Huntington's disease — an incurable brain disorder that slowly diminishes a person's ability to walk, think, talk and reason.
The disease has taken its toll on Quinn's father. He is now 55 years old and living in a nursing home.
"It was getting to the point where he would get bread stuck in the toaster and not be paying attention and it would catch fire," Quinn said during a recent interview at her Derry home.
The disease afflicts 30,000 Americans. It is hereditary, and as of yet, has no cure, according to the Huntington's Disease Society of America.
Quinn, now a 28-year-old married mother of a 4-year-old boy, knows she has the faulty gene, but she doesn't have any symptoms yet.
The Methuen native is preparing to testify before Congress on March 18 in support of a bill — HR 678 — called the Huntington's Disease Parity Act of 2009. The bill was introduced on Jan. 26, 2009, and if it's passed, the legislation would eliminate the two-year waiting period for Medicare eligibility for people disabled by Huntington's disease.
Quinn's father waited more than two years for Medicare benefits after being forced to leave his job as a welder. He had no income and was only "somewhat" covered under his wife's health insurance. On top of that, Quinn's mother had to be the family breadwinner, providing for Quinn and her sister when they were children.
Once he was on Medicare, Quinn's father was able to receive better medical care and see medical specialists familiar with Huntington's disease, his daughter said.
Quinn figures she will start to experience symptoms when she's in her mid- to late-40s, but thinks advances in medicine will stave off severe problems until later, perhaps when she's 50.
Her long-term outlook remains bleak.
"I will lose the ability to speak, to feed myself," she said.
Quinn works in the communications department at Caritas Holy Family Hospital in Methuen. She and her husband, Bill, a Salem, N.H., native, have a son, Anthony. And she doesn't want her family to have to wait two years for Medicare benefits when her condition deteriorates.
She has already been in touch with several U.S. representatives and senators in Massachusetts and New Hampshire, soliciting support for the legislation.
"A person with disabilities who has no other means of obtaining health care coverage should not be forced to wait two years before qualifying for Medicare," said Sen. John Kerry of Massachusetts. "This waiting period should be eliminated entirely and I'll continue to work with my colleagues in Congress to determine how best to make that happen.
"Laura has been a terrific advocate for those affected by this unfair law and it's important that she continue to speak loudly on their behalf."
Congresswoman Niki Tsongas, D-Mass., also supports HR 678, said spokesman John Noble.
So does Congressman Paul Hodes, D-N.H.
"Paul supports this bill and continues to believe that comprehensive health insurance reform is necessary to increase access to quality lifelong health care," spokesman Aaron Rottenstein said.
Senator Jeanne Shaheen, D-N.H., hopes to meet with Quinn soon to discuss the legislation, according to Press Secretary Nell McGarity.
Bill Quinn said he tries to stay positive about his wife's health, "having faith that there will be some kind of (medical) breakthrough."
Huntington's disease usually develops in adulthood. There is a juvenile form, and 4-year-old Anthony does not have it. He'll be tested for the adult form when he's 18, his mother said.
Laura Quinn doesn't dwell on what's in store for herself.
"Because then it's just going to ruin the good time that I have now and the memories that I leave him (Anthony)," she said.
