Cover_Jan 05 (Page 2) - The Parklander Magazine

Payton Has Lots Of Pals
In Dealing With SMA
Sari Rotenberg, director of rehabilitation at Northwest
Medical Center, was awarded a $1,000 gift check over the
summer as the HCA Community Hero Award. She chose to
apply her award to “Payton’s Pals.”
Payton’s Pals is a non-profit volunteer organization dedicated
to the eradication of Spinal Muscular Atrophy.
Payton was born with SMA – Spinal Muscular Atrophy.
Payton has a PEG tube, which allows him to eat. He is on a
breathing machine 24 hours a day because his lungs would
collapse without it. His mom, Debbie, has been bringing little
Payton to rehabilitation two to three times a week at
Northwest Medical Center since he was two months old. He
is now four.
Susan Sayles is the Registered Physical Therapist who has
worked with Payton. She trained at Barry University and
received her Master’s Degree in Physical Therapy and has
worked with the very sickest infants since 1997 and specifically
at NWMC since 2000. Sayles explained that when Payton first
came he could not move anything, which is so often the case
with infants and toddlers with SMA. He can now move his
wrist, fingers, knees and his head in a yes and no position.
She uses BMS (Bio-medical stimulation) and a swing with
Payton to assist his mobility efforts. The BMS equipment
allows for mechanical stimulation to excite the muscle fibers,
allow stretching and thus prevents contractures of the muscles.
The swing allows Payton to experience movement in his
A Source Of Support
For Patients and Families
You just learned your child needs life-saving heart surgery.
Suddenly, fear and questions begin to crowd your mind.
Aside from your doctor, to who else can you turn
How about Mended Little Hearts, a pediatric cardiac
support program of Mended Hearts, a nationwide volunteer
organization affiliated with the American Heart Association.
The nation’s first Mended Little Hearts group was formed in
late 2003 at Joe DiMaggio Children’s Hospital and was recently
chartered by its 50-year-old parent organization on Aug. 26.
“This is truly a dream come true,” said Chuck DiComo,
president of the Mended Hearts chapter in Hollywood and
founder of the Mended Little Hearts group. “It all began with
a call for help from a parent who was facing the tremendous
uncertainty and understandable fear that comes with having
a child born with a heart defect. We were able to match her
with another parent who had faced the same challenges and it
made a big difference.”
environment. “He loves the swing.” Payton’s grandparents
bought the swing to have at their home just for Payton.
Payton is still here due to rigorous physical therapy and
his parents’ unbelievable care that has protected little Payton
from getting sick. “Northwest Medical Center has been
great!” Debbie said. “Susan is the best Physical Therapist ever!
Sari (Rotenberg) is unbelievable! Gloria and Jen, who run the
front desk, are just amazing.
“It’s been a pleasure and one of the nicer reasons why we
take my son out of the house to go to rehab two to three times
a week. He is well taken care of.” Payton’s successes are measured
in extremely
small steps. Without
the therapy Payton
would have a very
difficult time indeed.
One out of every
40 people carries the
gene. One out of 6,000
babies are born with
the disease of those
who carry this gene.
While this disease is
more prevalent than
Payton has lots of support at
ALS (Lou Gehrig’s
Northwest Medical Center.
Disease) it is not as
well known. NIH
(National Institute of Health) provides $30 million dollars of
funding to ALS while $5 million is given to SMA.
Debbie and her husband are committed to raising
awareness about SMA. Payton’s Pals’ organization has been
able to raise money to pay for a wheelchair for a little girl who
lives in Coral Springs or for a child who needed care that
resided in California. There are no geographic boundaries. ● P
According to DiComo, with Joe DiMaggio Children’s
Hospital’s support and assistance, the program soon grew to
include several more parents and “was well on its way to sure
success.”
In addition to providing support to family members and
other caregivers of children affected with congenital heart
defects/heart disease, the program offers educational
resources and trained/accredited hospital visitors. Since the
local group was formed, several other Mended Little Hearts
groups have been established in other parts of the country.
According to Mended Hearts volunteer vice president
Tita Hutchens of Lodi, Ca., the local experience will be instrumental
in helping to shape the direction of other groups.
“We consider this program in many ways to be a model
for what other groups can do, and as I travel the country, I’m
finding there is a great need for this service,” she said. “The
local volunteers and Joe DiMaggio Children’s Hospital can
take pride that they are making a difference in the lives of families
locally and way beyond South Florida.”
Mended Hearts, a national nonprofit organization affiliated
with the American Heart Association, has been offering
the gift of hope to heart disease patients, their families and
caregivers for more than 50 years. Recognized for its role in
facilitating a positive patient-care experience, Mended Hearts
partners with 460 hospitals and rehabilitation clinics and
offers services to heart patients through visiting programs,
support group meetings and educational forums. Its mission
is to “inspire hope in heart disease patients and their
families.” ●P
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