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Isabel Jurado Izzy at the beach August 2008.
” . . . and a little child will lead them.” (Isaiah 11:6)
Welcome to Isabel's Web Page. It has been provided to keep people updated about Isabel's journey with MPS III (Sanfilippo Syndrome) and to increase awareness of this horrible disorder.
On May 23, 2005, the day after Isabel's third birthday, we received news that she had this catastrophic metabolic disorder. After months of worrying about Isabel's development and discovering a hearing loss that was not present at birth, we now knew what was going on with our baby. Sanfilippo Syndrome is a mucopolysaccharide disorder and is also known as MPSIII. Sanfilippo is a recessive genetic disorder meaning both parents must be carriers. With each pregnancy there is a 25% chance of having a child with Sanfilippo. Children affected with MPSIII are missing an enzyme that breaks down strings of a complex body sugar called heparin sulfate. The partially broken down sugar, or muccopolysaccharide, accumulates in the brain and other organs causing progressive damage.
Children with Sanfilippo often appear normal at birth and will develop normally for the first year or two, but as more cells become damaged symptoms begin to appear. Eventually the build up of muccopolysaccharides causes hyperactivity, hearing loss, sleep disorders, loss of speech, mental retardation, dementia, and finally death.
There is no cure for MPSIII. Parents are given very little hope. The only treatment is a stem cell transplant which have been performed mostly at Duke for kids with MPSIII. This is not a cure but a way to stop the progression of the disease.
Due to Isabel's current stage of progression of Sanfilippo, our family has decided not to pursue stem cell transplant. We are living life one day at a time and raising money to find a cure for MPSIII.
TO LEARN ABOUT ISABEL AND HOW TO HELP, PLEASE VISIT:
The Isabel Jurado Foundation website
Journal
Tuesday, March 3, 2009 10:50 AM CST Hi Friends
I have had a hard time loggin onto this caring bridge account from Colombia, South America. You can follow our adoption journey at www.journeytosaramaria.blogspot.com.
Izzy is doing well and is being cared for at home in Rock Hill by Kelly, my mom, and Kristin. Me, Jimmy and Jay are in Colombia now joined with our newest addition to the Jurado family, Sara Maria. We have been here a little over two weeks and are just waiting for paperwork/court proceedings to complete Sara Maria's adoption and be able to return home to Izzy. Please pray for Izzy contiued good health.
God Bless,
Leslie
Read Journal History
Links: http://www.isabelfoundation.org http://www.mpssociety.org http://www.laurenshope.org
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