20
year old Erin Murphy Peters lives in Woodstock, Georgia with
her parents, Tom and Stacy, her sister Kelly (17) and brother Benjamin
(14).Erin was diagnosed with
MPS III in March of 1996. She was three months shy of completing 1st
grade and her 7th birthday. Up until that point, Erin was a happy,
healthy "normal" child. Erin's first grade teacher, Mrs. Jane Hancock
informed us that she was beginning to notice some signs of fatigue
and lack of concentration in Erin. She suggested we check with our
pediatrician to make sure there were no medical causes for this. In
a matter of weeks, with the help of our pediatrician, a gastrointerologist
and a neurologist, the diagnosis was made. We were told that Erin's
blood tests showed a lack of the enzyme alpha-N-acetylglucosimanidase
which is associated with San Filippo Syndrome, type B. Unfortunately,
we left with both heavy hearts and no treatment options. At this time,
neither has changed.
Erin
attends school at Woodstock High School in Woodstock, Ga. She is in
Ms. Laura Ballengee's Special Education Class for children with severe
and profound disabilities. Due to the regression caused by the MPS,
she is currently functioning at about a one year old level. She has
lost most of her cognitive abilities and is beginning to lose her
balance more and more, a sign of impending loss of mobility.
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Erin at age 2
Her
favorite things include Scooby-Doo, Rugrats and Arthur. She enjoys
swimming, doing puzzles, going to school and being with her family.
She also enjoys music. Her favorite restaurant is Ruby Tuesday's
and she loves all of the original Disney videos (Cinderella, Snow
White and Sleeping Beauty are the top three favorites!). So far,
Erin is still able to travel to see both her grandparents in Cleveland
and Memphis. Erin's
favorite animal is her dog Snickers. She is a 8 year old chocolate
lab. She came to us in a most unusual way. After receiving the tragic
news of Erin's disease, we were told by our pediatrician that because
Erin's condition is terminal, she qualified as a "wish kid" with
the Make-A-Wish Foundation. This remarkable organization sent "wish
fairies" to our home to meet Erin and her family. Over a six month
period they got to know us and learn what Erin's most favorite things
were. Of all the things that Erin enjoyed, watching the cartoon
"Scooby-Doo" was
her most favorite. When she was asked if she could wish for anything,
she quickly responded
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with
"I want Scooby-Doo". The wonderful people at Make-A-Wish made this
dream come true in several ways. First, they arranged for a Scooby-Doo
character to come visit Erin at home.
She
was amazed and delighted when one evening the doorbell rang and
when she opened the door there was a life-size Scooby Doo waiting
to hug her. He played with her, gave her presents, even tucked her
into bed. As if that was not enough, following that, the Make-A-Wish
Foundation got Erin her own Scooby-Doo. Though not a Great Dane,
Snickers is a brown dog who has made Erin very happy and loves her
unconditionally. We are all grateful to the Make-A-Wish Foundation
for the happiness they have brought to Erin and us all.
In
the eleven years since Erin was diagnosed with MPS III, we have
met many wonderful people who have joined our fight to find a cure
for this rare disease. The "Run for Erin" is our way of contributing
to the National MPS Society as they fund research efforts, clinical
trials and support families whose lives have been invaded by MPS.
Thank you for visiting our site. Please return soon!
Erin
with Kelly & Ben
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