Thursday, April 14, 2005 1:18:01 PM Central Time
By PENNY MULLINS
EagleHerald senior staff writer
Jerika Bolen, 3, pulls her mother, Jennifer, behind her
motorized "wheels" at their home in Menominee. Jerika has
spinal muscular atrophy, and her mother is working to raise
money to buy specialized equipment to keep her muscles
Jerika Bolen has never taken a step in her young three years of
life, yet she already has taken many journeys.
journey is attending school. The bright and energetic little girl is
full of life and excitement as she recites sayings and shares songs
she has learned with her classmates.
all of this is done in the front rooms of the home she lives in with
her mother and aunt in Menominee, and it is done while she streaks
around the rooms in her motorized wheelchair she simply refers to as
She can zip
right up to someone and stop on a dime. The chair turns in a tight
circle to allow her a quick escape and is small enough to fit
through spaces not wide enough for a conventional wheelchair.
But it places
the fragile child in a sitting position for much of her day, and
with a disease that weakens her muscles and eventually, her bones,
Jerika will lose the ability to sit up straight in her chair as time
spinal muscular atrophy, a progressive neuromuscular disease that
generally leads to the loss of function in voluntary muscles. As a
result, children affected with the disease can lose their ability to
sit, stand, walk, control their head, swallow or breathe.
diagnosed with SMA when she was about a year old. Her mother,
Jennifer, has maintained Jerika's strict amino acid diet, which
includes extra vitamins and calcium, through a feeding tube she has
had since diagnosis. Jerika can eat some regular foods, but not
enough to sustain her.
She also uses
a bipap machine, which controls oxygen flow into her body, for
certain periods each day. Breathing is often difficult for children
with SMA, since their muscles are not strong enough to take deep
ability to fully breathe in and out on her own, Jerika also uses a
machine to help her cough. It expands her rib cage and breaks up
mucus that collects in her lungs, which can then be suctioned out.
Every day is
a lot of work for Jennifer, a single mom. She gets help from her
sister, Lisa Bolen, and her mother, Sue Bolen, as well as a physical
therapist who works with Jerika every week.
But when it
comes to finding out about new treatments, therapies or the best way
to care for her daughter, Jennifer has learned to become Jerika's
communicates regularly with other parents of children with SMA, and
has tragically seen many of them succumb to the disease. She and
Jerika attend annual conferences where they can learn about new
medical advances, and she is constantly on the Internet doing
children we knew well have passed away recently," said Jennifer,
"including one little boy who fought so hard."
at least 30 children she has come to know through a Web-based
support group or the conferences have died since Jerika was
diagnosed. "It is so hard. When Jerika is 10, what are the numbers
going to be?"
What she has
learned is that Jerika could benefit from using a device called a
Sprout dynamic wheelstand, which would place her in a standing
position, with support, to allow her body to stretch out and build
some lower bone strength.
on her hips and knees affect her bone density," Jennifer said. "She
easily breaks bones all the time." The stand also will help slow the
progression of scoliosis, or curvature of the spine.
her physical therapist, it also will allow her to interact with
people at eye level.
wants Jerika to have the special wheel stand, but funding was denied
by the state agency that funds her care. For Jennifer, it's all
about doing everything she can to enhance her daughter's quality of
life for however long she can.
those other children is a constant reminder that she could be gone
tomorrow," Jennifer said. "One day is good, the next is bad."
Jerika to school in the Early Childhood Program at Central
Elementary has its risks.
resistance to infection is low, and she's around other children with
the usual litany of colds, coughs and viruses. She has brought some
of them home, which can be catastrophic for her. A cold she
contracted in June 2004, before she attended school, sent her to
Madison, Wis., in an ambulance. Her local pediatrician, Sandy
MacArthur, accompanied Jerika all the way there.
the risks, Jennifer said she wants Jerika to attend school like any
other child. "She enjoys it so much that unless it becomes a serious
threat, she'll stay in school," she said.
"wheels" were paid for through a state fund, Children's Special
Health Care, which also helped Jennifer purchase a van and ramp a
denied her request for a power stand, saying that her existing
powerized wheelchair provides her with enough independence.
As a result,
Jennifer has taken it upon herself to raise the $13,000 needed for
the stand, and is planning a fund-raising walk at Menominee High
School later this year. She also is working with her employer to
sell candles, proceeds of which would go to a fund being set up at
Niagara Area Credit Union in Marinette.
support group has some funds available to cover funeral and burial
costs and for conference attendance, but I don't want to take that
money away from other families," said Jennifer.
As she works
toward raising enough money for Jerika's wheelstand, Jennifer also
looks at making Jerika's life as happy and normal as possible.
getting older, she sees her younger cousins walking, and says 'I'm
getting bigger, but I'm not a walker.' We never lose hope that they
will find a cure. They have cured the disease in mice. I never said
'never' to her."
realizes that she, like so many children she has met with her
disease, may die some day. "She asks about heaven, because we've
sent up balloons for the children we know who have died. But she
says that she can walk when she goes to heaven."
she never looks at her own role as one of hardship.
"I think of
them as angels and feel blessed that someone trusted you with them.
Nobody in Jerika's presence will ever be sad."
Jennifer can be
firstname.lastname@example.org for more information about the upcoming
fund-raising events. More information will also be printed in the
EagleHerald as it becomes available.