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Adrian Walker

A mother’s crusade

By Adrian Walker
Globe Columnist / September 29, 2009

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Laura Linehan’s death was the end of a life, but the start of a quiet crusade.

Since the young Melrose woman died, far too early, from liver disease, her family and friends have waged a low-key but effective campaign to get Massachusetts to care about organ donation and transplantation.

They will be in a hearing room at the State House tomorrow, urging lawmakers to support a bill making it easier for people to donate, and receive, organs.

Ann Linehan, Laura’s mother, has seen both the urgency of the cause and the resistance it sometimes encounters.

“People come up to me and say they don’t want to donate their organs or a loved one’s,’’ she said, weariness and frustration evident in her voice. “They think it will never happen to them.’’

Laura Linehan received her first liver transplant at the age of 2. By her teens, hepatitis C, contracted through a blood transfusion, had ravaged her second liver, requiring another transplant. The Linehans quickly discovered that the waiting list in Massachusetts might be longer than her life expectancy.

So Laura and her mother moved to Florida, where the waiting list was shorter. Laura became a patient at the Mayo Clinic in Jacksonville. After an emergency last-minute plea, a donor surfaced. But it was too late. By the time the transplant surgery began, Laura was too weak. She died shortly after surgery on April 4, 2008. She was 20.

A variety of efforts sprung up in her memory. Friends ran the Boston Marathon in her honor. The Registry of Motor Vehicles moved to make organ donation easier by allowing people to register as donors on its website. The Department of Revenue did the same.

The bill now being debated would revive a long-dormant committee in the Department of Public Health and put it to work educating people about organ donation and transplants. It would also establish a fund to support the cause.

Its major sponsor is Representative Katherine Clark of Melrose, a family friend of the Linehans.

“She was just a wonderful, wonderful spirit,’’ Clark said yesterday. “We were so hopeful when they moved to Florida that this would be a new beginning. We thought all our prayers had been answered, and to hear later that day that she has passed away was just devastating.’’

Linehan believes that making organ donation as easy as possible is one of the keys to creating a larger supply.

The idea of approaching the Registry about getting involved came to her when she was doing her late daughter’s taxes: There was a box asking people to contribute to an organ donation fund, and she thought filers should be asked whether they wanted to donate organs as well as money.

Her crusade is rooted in the heartbreaking idea that her daughter didn’t have to die.

“I remember her looking at me in the ICU and saying, ‘Mom, please don’t let me die.’ And there was nothing I could do,’’ she said.

Finding an outlet for grief does little to lessen it.

“There’s a giant hole in our family,’’ Linehan said yesterday. “I miss her more every day. Working on this bill does not make me miss her any less. I feel that I’m doing something to honor her, but the bottom line is that no parent should have do watch their child die because there’s something that could save them, but you can’t put your hands on it.’’

Since Laura died, Linehan has experienced an outpouring of sympathy and support. But she has also witnessed the wariness that comes with asking people to think about a subject that inevitably involves their death.

She gives speeches in schools and public places - she will talk to anyone who will talk to her - and finds that people connect to her family’s struggle.

“If you walked in my shoes,’’ she said, “you would do anything to get someone to be an organ donor.’’

Adrian Walker is a Globe columnist. He can be reached at walker@globe.com.