�See
how she�s smiling? She�s seeing her body do things that she can�t always get
it to do. She�s smiling because she can do it,� says Jennifer Wallace,
gesturing toward her 10-year-old daughter Rachel.
With bright, expressive eyes and long blonde hair that
rings her face and spills down her back, Rachel happily participates in
exercises to build her strength. A wide smile never seems to leave her face,
even during intensive therapy at Richmond Hope Therapy Center in western
Henrico County. Along with all her other therapies and treatments, twice a
year Rachel participates in the center�s intensive therapy sessions (four
hours a day, five days a week for three weeks) designed to help her gain
strength, balance and improved daily function amid a diagnosis of cerebral
palsy (CP).
Wallace, 32, who lives in Caroline County, admits she
�bawled my eyes out� when Rachel was diagnosed with CP at age 10 months.
�When she was first diagnosed, I was told everything she
wasn�t going to be able to do,� she recalls.
Cerebral palsy, a non-progressive
disorder usually caused by damage to the motor control centers of the
developing brain, is marked by muscular impairment and is often accompanied
by poor coordination and speech difficulties. Although Rachel was started on
various therapies shortly after the CP diagnosis, it wasn�t until Rachel was
two years old that her mom met another mother of a CP child at a local mall
who told her about Shriners Hospital.
�I had seen the little clown cars
[in parades], that was all I knew about Shriners,� Wallace says. �It wasn�t
until I went to the Shriners Hospital that I finally felt hope. I stopped
speaking about what she could not do, and now I think about all the things
she can do.�
nearly a century of care
Shriners Hospital for Children, headquartered in Tampa,
Fla., is a network of 22 nonprofit hospitals in the United States and Canada
that date back to the 1920s. Originally formed to treat young polio
patients, the hospitals are the charitable arm of Shriners International, a
self-described fraternal organization. The hospitals treat children 18 and
under for a wide range of pediatric orthopedic conditions, as well as cleft
lip and palate conditions, burn care and spinal cord injuries.
In 2011 Shriners Hospitals began accepting insurance
payments, although care is provided regardless of patients� ability to pay.
Hospitals are funded by gifts, donations, fund-raising efforts and endowment
earnings. Transportation to and from Shriners Hospitals is also provided by
the Shriners, with local chapters providing transportation (or reimbursing
parents who drive themselves and their child), as well as covering meals,
lodging and travel expenses.
John O. Larson, along with Jim
McAllister, oversees Richmond�s Acca Temple Shriners� transportation
committee. �We have two vans and we have two
drivers [per trip]. We�ve created a team of good, quality people [who are
volunteer drivers],� Larson says. �My job is to coordinate with families and
kids when they have appointments. We have kids going to 11 different
hospitals around the country. In 2000 we had 70 kids; now we have 430 kids
in our area we are helping. We spent $75,000 last year just on
transportation.�
Larson, 70 and retired from the
Richmond Police Department, says most children in the Central Virginia area
go to hospitals in either Philadelphia or Green�ville, S.C., that handle
primarily orthopedic and CP patients; about 20 children receive burn care at
the Cincinnati hospital. Larson oversees transportation but also continues
to be a volunteer driver and has driven Rachel and her mom many times to
treatment.
�I�ve been to Philadelphia 79 times,� he notes. �In
Greenville I have a hotel where we arranged a discounted price; we take care
of the reservations and they direct-bill us. I spend about two to four hours
a day working on hospital stuff.�
Larson, who has two grown children and grandchildren,
admits, �I get excited to see these kids progress over the years and do
things I never thought they�d be able to do. It gives you a totally new
outlook on life.�
Children 18 and under are eligible for care if, in the
opinion of Shriners Hospital physicians, they can benefit from the
specialized services available. Applicants are accepted solely on the basis
of the child�s medical needs. Families can apply directly and physicians
make referrals as well.
Larson says, �We also do screening clinics. We have about
15 set up this year in different parts of the state. We have a doctor and
nurse at the clinics to examine children and see if we can help; we don�t
treat cancer patients, for example.�
He adds, �One of the biggest misconceptions most families
have is when you let them know they won�t get billed an enormous amount of
money. The second question people usually ask is, what kind of doctors do
they have? Some people think they will get a second-rate quality of care,
but Shriners Hospitals have some of the best doctors who specialize in their
fields.�
�Everyone there is very polite and sweet,� Wallace says
of her own experience. �They deal with hundreds of kids but when we get
there, they recognize Rachel. There is always a situation worse than your
own ... I see Rachel and all she struggles with, but all in all, she is
blessed.�
Early on, Jennifer and Rachel
went to Shriners Hospital in Philadelphia five or six times annually; now
they go two or three times a year. In 2009 Rachel had spinal surgery at the
St. Louis Shriners Hospital designed to permanently reduce some spasticity.
Her mom says the surgery has made �a huge positive difference in her life.�
She adds, �She is stronger on top than she is on the
bottom, and better on the right than she is on her left. Cerebral palsy is
brain damage, so every child with CP is different, depending on what part of
the brain was damaged.�
Rachel particularly enjoys the warm-water therapy pool at
the Philadelphia hospital; her mom says cold water makes Rachel hurt but the
warm water pool is like going to a spa. Another treatment Rachel has in
Philadelphia: Botox injections, which requires that she be placed under
anesthesia when affected muscles are injected.
�Rachel has spasticity problems, which means her limbs
are tight. After Botox, kids seem very weak because instead of using their
spasticity to help them stand, they have to use their muscles,� Wallace
explains. �When the spasticity is so tight, you can�t work the muscles, so
she can actually work the muscles [after treatment].�
Rachel just finished third grade
and via an IEP (individualized education program) for children with
disabilities, has an aide at her public school who has been with her for
five years. Although Rachel has some cognitive delay, Wallace notes, �She is
very intelligent and understands everything that is said to her. She could
have a conversation with you if it weren�t for the fact that the tongue is a
muscle, which is also difficult to control, but if you know her you can
figure out what she is saying.�
Wallace is the mother of two other children (Riley, 7,
and Matthew, 20 months) and has a supportive significant other, Sean
Connolly. A happy child with a sunny disposition, Rachel likes dolls and
loves crafts and playing with paper, which her mom says helps her fine motor
skills. A small suitcase at home is filled with paper, scissors, glue sticks
and colored markers that Rachel uses to create her paper crafts. In the
summer months she enjoys riding a therapy bike outdoors that Wallace
describes as �a huge tricycle with seat belt and footplates,� although rides
must be supervised. On the weekend she likes helping her mom scramble the
morning eggs, and although she needs help getting to the breakfast table,
she independently feeds herself. Independence is an important word in
Rachel�s world.
�Sometimes I try to help her and she will say no,�
Wallace says. �There have been times I have tried to play with her and she
will say, �Mommy leave!� She�s very social, and she wants to be like the
other kids.�
Being like the other kids is important to Wallace, who
says her early sadness at Rachel�s diagnosis was primarily related to
concerns over how her daughter would be treated by others.
�Growing up I watched people be cruel to people with
disabilities. Kids who are different are easy to pick on,� she explains.
�But the kids in our county have grown up with Rachel, they fight over who
will push her wheelchair or help her with her walker.�
Wallace does admit that every day remains a struggle for
Rachel, adding, �So many things I took for granted before I had Rachel I
don�t take for granted anymore. But time has told everything about Rachel�s
story, and every year she does something that surprises me.�
She believes �God put His hand out and put us in the
right place at the right time� when she recalls her fortuitous mall meeting
with the mom who first told her about Shriners Hospitals. �It
all starts with a phone call,� she says. �Rachel would not be where she is
today were it not for Shriners Hospitals.�
For more information:
Shriners Hospitals for Children
P.O. Box 31356, Tampa, Florida 33631
Telephone: 1-800-237-5055
Website: www.shrinershospitalsforchildren.org
