I just want to start by telling everyone Thank you so much for all your Prayer's, Love and Support it truly means a lot to all of us! Having your strength makes all of us so much stronger! Mykenzie is going to need all of our strength and love to get through this. We have to be strong for our little angel. She is such a fighter!!!! We know in our hearts that she is going to be just fine!!!! We love her dearly!!!! Mymy is our little blessing from god and we are so lucky to have her in our lives! She desevers the best and that's what we are going to do for her!!!! We Love you all so much!!! As you all know our daughter Mykenzie has a disease called Hurler Syndrome. MPS 1 {mucopolysaccharidosis} (myk-pl-sk-r-dss) are missing one specific enzyme called alpha-L iduronidase, which is an essential in the breakdown of a certain GAG {Glycosaminoglycan} (glī'kōs-ə-mē'nō-glī'kăn) called dermatan sulfate and heparan sulfate. The incompletely broken down dermatan sulfate and heparan sulfate remain stored inside cells in the body and begin to build up, causing progressive damage. The GAG itself is not toxic, but the amount of it and the effect of storing it in the body lead to many physical problems. The GAG are long chains of sugar molecules used in the building of bones,cartilage,skin,tendons and many other tissues in the body. These sugar chains are submicroscopic and cannot be seen with the eye, but can se studied using special scientific instruments and analytical methods.
Mymy was diagnosed early enough {were praying she was} to where she will have a better chance of the progression being slower once we start treatment, because some children dont find out until they are between the ages of 1 and 3 and sometimes by then its to late.We have a few decisions that we have to make with the treatment for Mymy. Which are unbilical cord blood transplant, Bone marrow transplant and enzyme replacement therapy.This is a very serious disease and only happens 1 out of 100,000 births. We will do whatever it takes to slow the progression!!
If you would like to read up on this more please visit this web site:
http://www.mpssociety.org/content/4021/MPS_I/
You can also watch these vidoes: click on the web site and then click on "PATIENT STORIES" :
http://www.mps1disease.com/patient/about/mps_pt_what_is_mps.asp
Also this is the web site that will help you to understand more about the Bone Marrow Transeplant, Unbilical Cord blood Transplant and Enzyme Replacement Therapy.
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/hematology/bonetran.html
We will keep you all updated as we know more. We are going to go back to Standford University on November 19th and we will be meeting with the Bone Merrow Transplant team to find out more information about the treatments.