First post:
Sep 25, 2017 Latest post:
Jun 19, 2018
It is with a heavy heart and great sadness that this site was started. At the end of August, Jackson was diagnosed with Metachromatic Leukodystrophy (MLD). At the age of 6, he was given a diagnosis with no cure. For those of you who know Jackson he’s one of the funniest, happy, easy going kids. He likes nothing more than to have play dates with his buddies and have family over for dinner. Being a parent to him has been a blessing and adventure all at the same time. No matter where you take him, he can have fun and make a new friend. This guy loves to laugh and in turn will make you laugh. We can’t imagine a life without him and have done lots of research to find a cure. Unfortunately, there is no cure, but a bone marrow transplant will slow the progression of the disease. He will endure two weeks of chemo to rid his body of his cells which are lacking an enzyme. The new cells were suppose to be from an umbilical cord donor (stem cells). It turns out his big sister Elizabeth is his 8/8 match. She has stepped up to give Jackson the biggest gift of all, her bone marrow. She will undergo surgery on the 18th of October. The goal is to reach 90% of the new cells generating the enzyme, he is lacking. We are hopeful that as medicine and technology grow, down the line they will be able to fix some of the deficits he now has as a result of the disease. Jackson will spend the next 3-4 months in Pittsburg undergoing numerous tests and procedures. Price tells him everyday he is the bravest boy and he truly is for all that he has been through and will go through. We have been forced to live in the minute and are thankful for every minute we get with our brave little boy. We are so appreciative for everyone’s support and sorry that you have to go through this with us.
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