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Our Rachelle was born in 1994. She appeared to be a happy, healthy
child until the age of three. When her speech did not progress
beyond three-word sentences, we began to have her tested. Initially,
doctors believed that she might be Autistic. Years later as we
noticed other areas of regression, we suspected that it was not
Autism and began pushing for genetic testing. In July of 2003,
it was determined that our precious Rachelle has Sanfilippo
Syndrome.
Sanfilippo
Syndrome is a mucopolysaccharide storage disorder also known
as Mucopolysaccharidosis lll, or MPS lll. It is characterized
by developmental delay with usually mild physical problems. This
is a rare, regressive, genetic disorder. Life expectancy is varied,
and noted to be between 11 and 15 years. There is currently no
treatment or cure.
Believing in the power of prayer, we ask that you put and keep
Rachelle on your prayer list. In addition, we would ask that you
share our request with other prayer warriors you know. Rachelle
is, currently, nonverbal and in a wheel chair.
As painful as it can be seeing her change, her smiles and giggles
make each day brighter. She is such a blessing, and has taught
us to value each new day. Rachelle has taught us to value what
is truly important in this life - our relationship with the Lord,
and with each other.
There have been so many that have touched our lives with their
encouraging support. We so appreciate them, and all their prayers!
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