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/
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
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
My brother and my friend
What fun we have
The time we share
Brothers 'til the end.
~ Author Unknown
Friday, August 5, 2011
Summertime
Things have been tough lately. I go through periods of time when I am so strong... never cry and just go on with life like nothing is wrong - enjoying the kids - living life. Then one day something will happen - nothing major - maybe just something small - and it knocks you right into reality. For instance, I may see a parent taking his or her two chidren up to Rita's to get some water ice. Both kids standing there so patiently waiting to order. And I think - we cant even take our kids up to the water ice stand b/c it is on a busy highway and one of them will try to run in the road or one of them will knock some other kid over or just generally cause a big scene. What people dont realize is it isn't always the big things that you cant do that really hurt but the little things that most people completely take for granite. And why wouldn't they...they dont know any different? I am just at the point now where I just think this all sucks! You can't help but think what the hell did we do to deserve this! Marriage is hard enough with out having to deal with caring for two special needs children and all teh strains that puts on your relationship as well as your relationships with other people as well. You do really find out who your true friends are though. I can say we are blessed to have the supportive friends and famiy we have. Well Ryan has been starting to talk less and less. He still says things from time to time - mostly repeating but I am afraid there isn't much cognition there. Brayden does so well with cognition - he understands way more than Ryan ever did. But, he really has never had much vocabulary. They are the sweetest most lovable boys - they love their family and they love their friends. They both love school which makes working easier knowing they are cared for and happy. As for good stuff, we are heading to the beach for a week which is always fun for the boys. WE are going to Disney in October for Ryan's Make A Wish trip. We are excited for that as well. Ta ta for now...
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