Our 2 year old son Killian Christie was diagnosed with infantile Metachromatic leukodystrophy (MLD) this is a very rare brain disorder that depletes the white brain matter that eventually leads to a child not having muscle control anymore.
It is a terminal Illness that is still in it's stages of research for experimental treatment, as of now research shows that our son will probably not live past 5-6 years old.
But as parents we are incredibly hopeful for the experimental treatment if he will qualify...
Killian also has four big sisters and as his father it has been an every day struggle to keep both my daughters and my wife level headed and focused during this time of great tragedy. Working in customer service is becoming quite challenging when everyone wants to greet you with "How are you today?"
We are reaching out to kind hearts that understand that chasing these experimental treatments will be very expensive, and also time consuming because some are located in other countries. It's becoming harder and harder to hold down steady jobs when you have a new doctor to see every week.
But even though our sons diagnosis is terminal, I refuse to give up hope. The treatments being developed will prolong his life and to me, every moment I can have with my son is worth it. And regardless of how Killian's Journey ends we find some comfort in knowing the research knowledge they will gather from our boy will help to develop treatments and one day, a cure.
To anyone reading this, you have a chance to truly make a difference with us, our family has been devastated by this and we just want to give our son the best time he has left on this Earth...
From me, my wife, our 4 daughters, and our beautiful baby boy, THANK YOU!!!