Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Tuesday, April 16, 2013

The Journey Begins

“Well it’s Hurler's!”  said the Geneticist late on Friday April 2nd, just 2 days shy of Coleson’s 18 month birthday.  I confirmed that Hurler's is MPS I.  "Yes,  any questions?" 

This was how we found out our lives would be forever changed.  (Mind you this was coming from the first Geneticist we saw who dropped the ball on the lab work/MRI several times.)

Since then it has been a whirlwind of phone calls with Dr.s, hospitals, insurance companies, friends and family.  I quickly learned that you can’t just rely on the medical system to handle the care of your child in a timely fashion and that as a parent you need to take charge of the situation.  Doesn’t leave much time to grieve, which may be a good thing. 

However I do feel confident that we are in the right hands and that Coleson will be getting the needed care and attention he deserves.    We will be starting his treatment regimen including intrathecal injections, Enzyme Replacement Therapy (ERT) and eventually a Bone Marrow Transplant.  Dr. Orchard and the University of Minnesota will be overseeing Coleson’s treatment and we will be temporarily relocating to Minneapolis (from Arizona) for 4-5 months. 

Coleson, Paul and I leave this Sunday for our initial visit with Dr. Orchard and his team for a week long of baseline tests on just about every part of his body, he gets his port put in and will receive his first inthrathecal injection (this is in the spine with the hope of getting the enzyme to the brain as regular ERT does not break the blood/brain barrier. 

They are currently testing to see if Peyton is a match for the bone marrow but chances are slim that she is both a match and a non-carrier of the recessive gene that causes MPS.  They don't seem worried about finding a match though.  There are bone marrow banks and cord blood banks to search from. 

I will try to keep up with regular status updates on this page and use "The Journey" page as more of a story format and Peyton's Pages so you can keep up with what is going on with her.  Afterall this is a family journey,  not just Coleson's. 

We thank all of my friends and family for the support they have given us thus far and for the support we will continue to rely on in the future.