March 16, 2010

Families' lifeline in mortal danger

— Her name was Molly. She was born into Bill and Terri Flaherty's life in 2005 -- and three months later she was gone.

''But we have no bad memories of those three months,'' Bill Flaherty said Tuesday. ''And that wouldn't have been possible without the Jason Program. They let us be a family.''

Molly, who died from an incurable heart condition, is one of hundreds of Maine children whose stories chronicle the eight-year history of the Portland-based Jason Program.

Its mission since 2000: to help seriously ill and dying children and their families navigate the nightmare into which they've been thrust, lending professional assistance with everything from pain management to in-home nursing care to emotional support for children like Aisling, Molly's older sister, who was only 3 when Molly died.

Flaherty took time out of a business trip to Indiana to call Tuesday and sing the Jason Program's praises, not just because he still does so every chance he gets, but because the program -- he calls it a ''hidden gem in our community'' -- is about to go under.

Its executive director and co-founder, Kate Eastman, said a national foundation of charitable jewelers recently dropped its funding of the Jason Program because of its own financial difficulties. Unless she can come up with $65,000 to keep it running for the next three months, Eastman said, she'll have to shut the operation down.

''The Jason Program is not about dying -- it's about living,'' said Eastman. ''And how ironic if the Jason Program dies because the public doesn't want to learn from these kids, doesn't want to look.''

Eastman, who named the program after a teenage cancer patient for whom she was a social worker years ago in Texas, said the worsening economy has prompted many, most notably the well-heeled, to stop donating to nonprofits in recent months.

''Keep the SUV or help a kid die comfortably?'' Eastman said. ''To me it's a no-brainer, but I guess I don't see the world through the same lens as some people do.''

Right now, she said, the Jason Program's seven-member staff -- it includes a doctor, a nurse and a social worker, all full-time -- is trying to stay afloat on a ''bare-bones'' budget that doesn't even include reimbursement for their travels all over Maine to meet with children and their families.

There's talk of a partnership with another nonprofit, she said, but that will happen only if the Jason Program can stay alive for another few months. Donations can be made at www.jasonprogram.org or by calling 773-2947.

Eastman's biggest concern is the 40 or so families ''in the thick of it right now,'' people who depend on the program simply to help them get from one day to the next.

People like Mark and Kiki Atwood of Bucksport and their 19-year-old son, Corey.

Corey, who has muscular dystrophy, was quietly starving himself -- he was down to 70 pounds -- when the Jason Program came along two years ago. Now, he happily corresponds via e-mail with nurse Greg Burns and looks forward to monthly house calls from the rest of the Jason Program staff.

''Emotional, physical, medical -- you name it, they do it,'' Corey's grateful mother said Tuesday. ''It would be a travesty for this to end.''

Columnist Bill Nemitz can be contacted at 791-6323 or at:

bnemitz@pressherald.com

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