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Isabel Jurado 
Cindy McCraw holding daughter Lauren with mommy and Izzy in summer 05.
” . . . 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, July 8, 2008 11:24 PM CDT Hi Friends
Today Izzy, Jay, Kelly and I went to the zoo in Columbia. We all had a great time and it was so great to see Izzy so content and taking in her surroundings. There were no major issues like no place to change a huge poopy diaper for a 70 lb child, no aggitation, no Jay Jay climbing into the Gorilla habitat, etc...Just a great time for all.
Izzy is doing great. She has gone almost three months without a seizure since starting Lamical in April. She seems to be on the right combination of medication to keep her seizure free, sleeping well at night, more interactive and just plain HAPPY. The bottom-line is that when Izzy is Happy then we, her parents are Happy...regardless of how rough, destructive, fast, heavy (to lift) she is. We just love her and want she see is happy and not distressed regardless of how hyperactive/destructive she can be. Life with Izzy means providing an environment that meets her needs not expecting her to be able to adapt to just any environment. That in turn limits where we can go with her and the amount of supervision she requires outside of an "Izzy-proof" setting.
Is she so calm now that we can just take her anywhere and major chaos does not follow?? NO but she is better and her wildness is not accompanied by aggitation, screams, and self-injurous behaviors. I realize now that it is not the WILD behaviors that are so stressful for me as her parent, it is when she is in obvious, frequent distress that I am miserable.
So life has been good for us. God continues to use her life to minister to us her family and friends. Through her he has changed our perspective from a Worldly one to an Eternal one and because of that we trust that regardless of her struggles on Earth, she is and will continue to be protected by her Heavenly Father.
She has taught us to accept that life brings trials and though our human nature is to avoid suffering at all costs, it is in our weakest moments that God works best.
Izzy will hopefully be receiving a new stroller chair in the next month or two as her current one (almost 3 years old now) is literally falling apart. Our insurance and Medicaid have now both approved so we are just eagerly awaiting.
Jimmy bought a used golf cart for our family to ride around the neighborhood in but specifically for Izzy who loves to ride. Since strolling is not always possible especially in the heat and gas prices are so high, we decided to get one and what a great decision that was. Izzy just loves it and it has seat belts too. She is so calm and content on it. So far she averages at least two 10-15 minute rides a day right now and with the size of our neighborhood and surrounding neighborhoods we can do a good bit of riding. It is a great way for her to be outside, not get too hot, have lots to look at, get some movement and without her constant dropping down to the ground and eating bark, leaves, rocks, etc. Jimmy had the foundation logo put on it to spread awareness while we ride. Oh yes, IT IS PURPLE.
Please pray for us as we make future decisions regarding the Foundation. We are wanting to make a research grant ASAP but are uncertain about how to best balance meeting the needs of MPS Families with that of funding research on such a large scale. We are also working hard to find the right balance of meeting the needs of our MPS family community while meeting our own "family time" needs.
Thank you for all of your prayers these past three years. They have carried us through and brought us to where we are today...Happy, grateful, and finding God's peace.
Read Journal History
Links: http://www.isabelfoundation.org
http://www.mpssociety.org
http://www.laurenshope.org
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