|Morgan Lawler is in the first grade.|
Rare patient inspires uncommon caring
There is no shortage of people who care about Morgan Lawler.
There’s Stan Piltch, principal of Mitchell Middle School in East Bridgewater, who’s promised to shave his head if this Friday’s fund-raiser brings in $20,000. Anna Bagley, a second-grader who used every penny of her First Holy Communion money to buy an easel and giant basket of art supplies to be auctioned off at the fund-raiser. Rick and Samantha Wood, strangers to the community, who for three years have organized a motorcycle ride to raise money for this little girl they met and fell in love with.
If love could cure Morgan Lawler, she would be well.
But what Morgan needs, and what there’s a shortage of, is money.
Morgan is 7, a first-grader. She has light brown hair and dark brown eyes and fibrodysplasia ossificans progressiva, or FOP, a condition estimated to affect 185 people in the United States, 700 in the world.
There is no treatment for FOP and there is no cure. It is a genetic malfunction that turns muscles, tendons, and ligaments into bone. It is painful. It is disfiguring. And it is fatal.
Morgan was 4 1/2 when her family found out she had it.
“It was a nice April day,’’ her mother, Kristine, remembers. “Morgan was dressed in her bathing suit.’’ She fell. An hour later her back swelled up like a football.
A week later Morgan’s stomach swelled. “She looked like she had been hit by a bus.’’ The swelling moved from the right side to the left. Doctors at Children’s Hospital, Boston, were stymied.
An MRI technician noticed similarities between Morgan and a New York boy he’d tested for FOP. He tested Morgan. Three weeks later, Kristine and her husband, Will, were told that their baby girl had one of the rarest, most disabling genetic conditions known to man.
To look at her you would never know.
So far, only her neck has been affected. But anything can provoke her body into growing bone. A cold. A virus. Yawning. A sneeze. Bumping into something. A fall. An injection. A skinned knee.
Or it could be provoked by nothing at all.
Kristine tells of a girl with FOP who went to bed one night perfectly fine and awoke in the morning with her elbow fused.
It can happen overnight. It can take months to happen.
But it happens.
Dr. Frederick Kaplan, Morgan’s doctor in Philadelphia, says FOP is like a sleeping bear that wakes up angry. You tiptoe around it. You try to let it sleep. But it wakes up anyway.
A small town is doing as much as it can. But what this family needs is a Daddy Warbucks. Because research dollars for a disease this rare do not exist. Because there’s no profit in finding a cure for 700 people.
So families, who are struggling to make ends meet, who need wheelchairs and ramps, accommodations for their homes and their cars, money for doctors and specialists, need to be fund-raisers, too.
East Bridgewater is a small town with a huge heart. But it’s not Beverly Hills. Money is raised dollar by dollar, through bake sales and spaghetti dinners, and raffles.
“One day at a time,’’ Kristine says. That’s how she lives her life, a life that has changed not just for Morgan, but for her whole family. Matthew, 12, and Marisa, 10, Morgan’s brother and sister, close drawers, pick up toys, sanitize their hands, so their sister doesn’t get hurt or sick.
“Was I born with FOP?’’ Morgan asked her mom the other day. “How come I didn’t have to be careful before?’’
“Because we didn’t know,’’ her mother said.
They take her to playgrounds at night when it’s less crowded. They use soft balls, when they play with her, soft toys.
“We don’t want her looking back and regretting that she didn’t move when she could.’’
“If Morgan gets stung by a bee, will she get a flare-up?’’ “Mom, is Morgan gonna be OK?’’ Matt and Marisa ask their parents.
The parents don’t know. Nobody does.
Donations to the Morgan Fund can be sent to Mitchell Middle School, 435 Central St., East Bridgewater, MA. 02333. To learn about the fund-raiser, call 508-378-8209 weekdays from 8 a.m. to 4 p.m. and press 0. For more about FOP, go to www.ifopa.org. Beverly Beckham can be reached at email@example.com.