Elizabeth and I found out yesterday afternoon that Isabella has Hurler Disorder. Hurler disorder is a rare genetic syndrome classified as a storage disorder. There is no cure and most children die due to organ failure by age 10.
We had an appointment this morning with Isabella's geneticist and were told about a relatively new treatment called cord blood transplant. When Hurler is identified before age 2 the stem cells from the umbilical cord of a healthy child can be transplanted and in many cases prevent Hurler from doing further damage to the brain and most organs. Time is critical as this does not correct the damage already done.
The nearest place that performs this procedure is in Miami. The three of us will be travelling to Miami on Monday to meet with the specialist to get the process started.
Our family needs prayer. Please pray for Elizabeth and I to wait on the Lord for what He has planned for us in this. Please pray for strength and trust in Jesus. Please pray for wisdom for the doctors and compassion for the insurance company. And of course, please pray for healing for Isabella.
Some information on Hurler also called MPS1:
....Please lift up this precious family in your prayers. Let us beseech our Lord for healing for Isabella and abiding comfort and peace for Charles and Elizabeth.