What is Sanfilippo Syndrome?
MPS III is a mucopolysaccharide disease and is also known respectively as Sanfilippo syndrome. All individuals with MPS III have deficiency of one of four enzymes,which results in the accumulation of glycosaminoglycans (GAG) inside special parts of the cell called lysosomes. This is why MPS III is part of a larger family of diseases called the lysosomal storage diseases (LSDs). The accumulation of GAG is responsible for numerous problems that affect individuals with MPS III. Sanfilippo is a fatal disorder which will cause gradual neurological and cognitive deterioration. There is currently no cure for Sanfilippo Syndrome.
To donate towards rearch for a cure please go to one or both of the following:
http://www.teamsanfilippo.org/
http://www.mpssociety.org/
"Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault
It's Not About Making it Through the Storm, It's Learning to DANCE IN THE RAIN
A Child
A child is like a butterfly in the wind
Some can fly higher than others,
But each one flies the best it can.
Why compare one against the other?
Each one is different.
Each one is special.
Each one is beautiful.
Author Unknown
All for one and one for all
My brother and my friend
What fun we have
The time we share
Brothers 'til the end.
~ Author Unknown
Summer
The summer has been going very well for us. The boys - especially Ryan- love to be outside. It has been unbearably hot but that doesn't seem to bother Ryan. Ryan is doing well in summer school with his familiar surroundings and same teacher and aide from last year. We are getting nervous about kindergaraten in the Fall. It will be a huge transition for all of us! Brayden is not progressing in speech very well so he is going from speech 2x/ week to 3x/week. I think they are going to increase his PT frequency also. Otherwise, the boys are doing well healthwise. We hope that the genestein will help them ... we are waiting for result from their most recent urine screen to see if their GAG levels have decreased further. We are going to the beach for a long weekend next week and the boys will really enjoy that. Hope it cools down a bit!
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