Jordans Chance At Life

Meet Jordan! Jordan is 7 and was diagnosed with Giant Axonal Neuropathy at the age of 4 in simple English it's the childhood form of ALS. Jordan is one in about 70 people in the world who have it. When we were diagnosed there was no cure and we were only given a limited amount of years of life. We have fought really hard to continue to live a normal life and provide him everything he needs. A possible cure was made and a going to clinical trial has been happening for the last year or two in hopes that everyone with this disease would be injected and would be able to live life . The results have been good and we are seeing positive results in the kids that have been injected.  We have visited the National Institute Of Health in Bestbesda, Maryland twice now for tests upon tests for them to keep an eye in hopes that we would be chosen next to be injected. There was no timeline to when our turn was going to come but we have always hoped and prayed that that time came soon. After years of crying, praying hoping, wondering why we have to go through this, seeing my son get worse by the day hearing the doctors continuously say they have no cure and accepting life for what it is and just making sure my son lives a comfortable life, WE HAVE BEEN CHOSEN!!!! We are patient number 9 and leave November 7th to The National Institute Of Health to be injected November 14th and will be there till December 14th . I have to leave my job as this is going to take over my life but we need help with making sure that everyone back home stays afloat during this time. Anything helps. Thank you so much and God Bless 

Mayra Reinert