To The
Alyssa Renee' Williams
Benefit Fund Page
This site is dedicated to my grand-daughter, Alyssa
Hi, my name is Alyssa Williams.  At the present time I am 16 1/2 months old.  I was born August 16, 1999.  While my mommy was still carrying me we knew when I was born that I had an enlarged kidney.  I had my first kidney surgery in Dec. 1999 at the age of 3 months.  The doctor's found that I had a duplicated kidney which had caused a few infections and my heart also became damaged.  In August of 2000, I went back to the doctor right after my birthday and found out I had to have another kidney surgery.  While I was there they found out my liver was also enlarging.  They ran several test on me and found out that I had MPS-1 Hurler-Scheie Syndrome.  My only hope (besides lots of prayers) was to have a bone marrow transplant.  This would reverse everything that was happening inside my little body to become back to normal.  In Dec. 2000 we found a non-related donor.  Jan. 2, 2001 I was admitted to Texas Children's Hospital in Houston, Tx.   I had to have a couple of weeks of chemo injections, a massive dose of radiation before I could have the bone marrow transplant.  I had my bone marrow on Jan. 9, 2000.  We are awaiting now to see if the bone marrow transplant took.  I will have to stay in the hospital for at least 2-3 months depending on how I recover.  My little fingers had already starting curling up so I may also have to have bone surgery later on in life to correct some of my joints.  Only time will tell about that.  My gammy has put this site up for me in order to try to raise money for the fund we have started for Bone Marrow Transplants.   Please click on the Digital Stitches links to make a donation or to purchase some designs she is selling for me.  Also,  Please click on the link below MPS-1 Hurler Syndrome to learn more about this disease.
What is MPS-1 Hurler Syndrome?
I'll give a brief description of MPS-1 Hurler Syndrome, but you should try one of the links on the next page to get a better description of it.
Mucopolysaccharidoisis Type I (MPS-1) or Hurler Syndrome.  It is a genetic disorder casused by a "bad" chromosome pair that does not contain the information needed to produce a certain enzyme called alpha-L-iduronidase.  This enzyme normally breaks down the mucopolysaccarides in the body.  People with MPS-1 can't break them down and they are stored in cells in the body causing progresive damage.  This is why Hurler Syndrome is also known as a "storage disorder".  The child appears normal at birth.  They progressively get worse as the mucopolysaccarides build up.  The skeletal system and internal organs, including the brain, is affected.  As the disorder progresses, the internal organs are enlarged and the skeletal deformities cause problems in walking and other areas such as the hands becoming claw like (the fingers begin to curl in and won't straighten out).  The brain is damaged by the build-up leading to severe retardation.  The affected child will usually die at age 5 from cardiac or respiratory problems.  Click on the
MPS-1 Hurler Syndrome Link below to find out more about this storage disease.
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