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On the move: Medfield boy receives uplifting
gift of mobility
By Kit Kadlec / Staff
Writer
Tuesday, December
24, 2002
Three-year-old William Johnson likes to go fast.
Sometimes he moves with so
much speed, he knocks over furniture and other surroundings in his way.
For many young boys of his
age, a need for that near-reckless pace is a norm at playtime. For Johnson, though,
being able to move around at all on his own is a whole new experience.
Diagnosed 15 months into his life with spinal muscular dystrophy, a
degenerative disease, William will continue to lose voluntary muscles over his
lifetime unless a cure is found.
Prior to the age of two, he
had already lost the strength to be able to crawl. He was then relegated to his
parents carrying him around, or to his wheelchair.
That changed last week,
though, when the Johnson family was delivered a new $13,000 "Standing Dani,"
a motorized machine that allows its occupant to move around while standing.
Being able to be stand upright is critical for those with spinal muscular
dystrophy , since it allows for proper breathing and bowel movements, while
also keeping other critical muscles in use.
William Johnson was moving
so quickly with it on the first day, that his family had to turn the speed on
the powerful machine down.
"They put him in the
chair, he basically went straight through into the dining room and right into
the dining room table set," said father David (Tripp) Johnson. "He's
been moving furniture ever since."
The vehicle was paid for
entirely by donations. Part was from the statewide chapter of Catholic charity
Knights of Columbus ($5,000), another part was from an anonymous donation
($6,000) and the rest was from the local Knights of Columbus ($1,000) and the a
fundraiser by the Johnson family ($1,000).
"It hits home when you
see a child like William," said Knights of Columbus Deputy Grand Knight
and Medfield resident Brian McGillicuddy. "You want to do everything you
can for him."
Johnson was in the early
stages of getting used to his new vehicle last week. In the front, it has a
glass plate that he likes to use to hold his collection of favorite dinosaur
toys.
Johnson first got to try the
machine out while he was in Chicago with his parents, at a conference about his
disease. After getting buckled in, the boy immediately took off at full speed,
knocking over a guard rail with the powerful machine, heading towards a fish
pond, according to his mother, Heidi Johnson.
Hearing her retell the story
to a visitor brought a big smile to her son's face, who finished it for her by
explaining how his dad pulled him to safety at the last minute from the fish.
The experience in the Windy
City convinced the Johnson's such a machine would greatly enhance their
youngest son's life. The family also includes siblings Abby and Matthew
Johnson.
"We thought (the
Standing Dani) was the most amazing thing," said Johnson's mother. "I
was in tears, because it looked like he was running."
Coming up for the funds for
the machine required some work, though, since its price tag is similar to that
of a new car. The Johnson's first thought their insurance would cover the cost,
but learned their son would have to reach the age of five before he might be
eligible.
"Basically, we wouldn't
be able to go through our insurance company without a dramatic fight, and it
wasn't a battle we wanted to do," David Johnson said.
That's when one of Heidi
Johnson's friends contacted McGillicuddy, who is part of the local chapter that
includes Medfield, Holliston and Medway. McGillicuddy helped the family apply
for a grant, which could be a maximum of $5,000, that they eventually received.
"We were just blown
away that they'd do this charitable effort for us," Heidi Johnson said.
Johnson told McGillicuddy
Christmas had come early for her son.
"This Christmas was
over for us as far as Tuesday," she said.
When warmer weather rolls
around, that's when William Johnson will be able to use his machine outside.
Last year, his parents would
carry him around the bases at the baseball field. That won't be necessary
anymore.
"Now he can run
independently," Heidi Johnson said. "Winter can't be over soon
enough."
Her son will also get to
participate in a relay race at the Pfaff Center soon for brother Matthew
Johnson's birthday.
One of the best parts of the
Standing Dani is that William Johnson can now stand, and won't have always look
up to his peers.
"There's that emotional
aspect of getting to see his peers at eye-level," David Johnson said.
"It just really gives William a chance."
While the disease is
degenerative, the three-year-old goes often to therapy, many times in a pool,
to keep his muscles going. Many diagnosed with the disease don't live past
their teens, but there have been cases where some lived until their 40's. The
Standing Dani will last Johnson until he is nearly five feet tall, which is
still years away.
"We're obviously hoping
there will be some cure before then," said his father.
The family recently put out
a Website in their son's name, called www.wishesforwilliam.org. While just
started, a foundation with the same name, Wishes for William, is also
collecting funds that may eventually be used for a first floor bedroom addition
to the family's home on the corner of Hospital Road and Harding St.
Reporter Kit Kadlec can
be reached at 781-433-8354 or kkadlec@cnc.com.