[Congressional Record Volume 142, Number 116 (Thursday, August 1, 1996)]
[Extensions of Remarks]
[Page E1440]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




        IN RECOGNITION OF KIRBY WILSON, GOLD MEDALIST IN COURAGE

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                        HON. WILLIAM O. LIPINSKI

                              of illinois

                    in the house of representatives

                        Thursday, August 1, 1996

  Mr. LIPINSKI. Mr. Speaker, over the last few weeks in Atlanta, we 
have adorned many Americans with Olympic medals as a testament to their 
dedication and courage. Today, I rise to pay tribute to another true 
champion of courage, Kirby Wilson.
  This special girl resides in Western Springs, IL. which is located in 
my congressional district. Kirby recently celebrated her 5th birthday 
with friends and family, where she received many gifts, such as a doll, 
bubbles, and kites. It would appear that Kirby enjoys a normal, healthy 
life, but unfortunately, she possesses a rare genetic disease. The 
illness, called Sanfilippo Syndrome, causes children to miss an 
essential enzyme that breaks down a complex body sugar. Consequently, 
the sugar slowly builds in the brain and stops normal development. 
Kirby's health will deteriorate as the disease produces hyperactivity, 
sleep disorders, loss of speech, mental retardation, dementia, and 
finally, death before she reaches age 15.
  Unfortunately, there exists no cure for Sanfilippo Syndrome. 
Moreover, it is difficult to gather researchers and raise money for 
Sanfilippo Syndrome because it occurs in just 1 of every 24,000 births. 
Many lawmakers support funding more well-known diseases such as breast 
cancer and AIDS. These lawmakers feel that it is imperative to 
distribute funds that affect the most people. However, this should not 
diminish the severity of Kirby's heartbreaking situation. Thus, I have 
written a letter to Dr. Harold Varmus, Director of the National 
Institutes of Health, in support of funding research specifically for 
Sanfilippo Syndrome.
  Meanwhile, Kirby's parents, Brad and Sue Wilson, have taken the 
initiative to form The Children's Medical Research Foundation. Kirby's 
parents have implemented hard work and sacrifice for the organization 
to engage in an active fundraising campaign. Brad and Sue Wilson 
planned the ``Sweetheart Dinner Dance,'' ``Kirby by Candlelight,'' and 
``The Fore Kirby Golf Fun Raiser.'' With the help of Kirby's friends, 
school, church, and family, these events have raised more than $140,000 
for the Children's Medical Research Foundation. This is a testament to 
the good that can result from people working together for a common 
cause.
  Due to the success of its fundraising, the Foundation has awarded a 
$40,000 research grant to Dr. Margaret Jones at Michigan State 
University. Currently, the Foundation is planning to issue a $100,000 
research grant to Dr. Chet Whitley at University of Minnesota. Dr. 
Whitley will collaborate with Dr. Elizabeth Neufeld, a UCLA researcher 
that recently won the National Medal of Science for her exemplary 
research on the Sanfilippo Syndrome. The work accomplished through his 
research will benefit not only Kirby Wilson, but future children that 
will be diagnosed with the disease.
  Mr. Speaker, if courage was an Olympic sport, Kirby and her parents 
would earn a gold medal. I only hope that one day, researchers will 
develop a cure to save Kirby and others afflicted with Sanfilippo 
Syndrome.

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