In April of 2013 my huband and I recieved some of the worse news any parents could recieve. We were told that our son, Andrew (2 years old at the time) was diagnosed with a very rare DIPG. With a matter of days of onset of symptoms he was completely paralyzed and couldn't sit or stand without assistance. They told us that less than 5% of kids diagnosed with this will pass before the 2 year point and that less than 1 % will live past the 2 year point. The doctors gave him 6 weeks to live. We started the protocols and continued on with our new "normal" life as best we could. We were told that we wouldn't see this 3rd birthday or his 4th birthday or his 5th or his 6th and here we are just shy of his 7th birthday. At the time of his diagnosis the only option for treatment was raditation, which we obviously did. For 44 months Andrew lived a very healthy and normal life with his tumor remaining stable. In Dec of 2016 during a normal routine MRI we saw regrowth and made the decision to re-radiate him. In Feb of 2017 we saw that 1 of the 2 new spots was gone and the other new spot was significantly reduced. The next MRI was held today, June 6 and we saw considerable growth. At this point he has very mild symptoms which are likely to increase in severity as time passes.
The only treatment for Andrew at this point lies outside of the United States. The treatments are something that our U.S. FDA won't approve. All monies would go toward the medical costs of the proceedures/MRIs/drugs/travel/etc.
With every day that passes he will get worse and eventually will die. I know I can't live without my baby.
Please help me save my baby. He is my life and I don't want to live without him.