Welcome Friends!
ZACHARY S.

Birthdate - September 17, 2006
DIAGNOSIS - Mitochondrial Disease
Theme - “Cars”


BIOGRAPHY

Zach was born 9/17/06 two weeks early but appeared healthy at birth. It wasn't until at about 3 months of age where we noticed he wasn't developing normally. He had pretty much stopped growing properly and at that point the FTT (failure to thrive) label was placed on him. He was sick all the time with sinus issues. He took forever to eat his bottle. From birth until after 2 years old he would sleep 20 hours out of 24 hours – just about every day. In his first year of life he had been tested for multiple things including CF - which at the time we were told was what it just "had" to be. All tests came back normal, except for allergy tests. By the time he was 18 months old we went in a different direction and out on our own looking for help as to what was happening - as our pediatrician seemed to just stop. At this point Zach was losing more and more weight, vomiting on a nightly (overnight only) basis, not talking - not even sounds would come out of him. He never rolled over and was late at doing just about everything. We found the doctor who would help us start an even longer journey then we'd been on. Right away the process of discovery was off to a very quick start and multiple specialists were added to his team. Around that time he also had started with intense therapy consisting of OT, ST and PT on a daily basis. At a little over 2 years old Zach's feeding tube was placed - we believe and have been told by all his doctors this tube helped to save his life. We still had no real answers of why it was needed - just told because of his FTT, multiple food allergies and gastroparesis were reason enough and to sit and watch - treat the symptoms we could but that we may never know what was wrong with our son. We did that.....but it was hard watching as things weren't improving how we had hoped. We knew we couldn’t give up and that we would find what it was someday. It wasn't until I had a call from a lady I will refer to as Zach's Angel on Earth - talking to me about her daughter and leading me to a very special doctor out of state. Zach was now 3 years 4 months old with more unexplainable symptoms - we couldn't wait and I fully trusted that Zach's Angel on Earth was sent to me for a reason. I contacted our doctor who contacted the other doctor and in 2 short weeks Zach was seen and having more testing done. 10 weeks later we had the answer of what was happening to our son -- he was given the diagnosis of Mitochondrial Disease 4/26/10. He has not had his diagnosis very long. Zach has since started a "Mito Cocktail" he takes 4 times a day - and is such a trooper about it! He has had more issues that we are still searching for answers on - but we know they all are happening due to his Mito. He has more bad days then good --- but we treasure every single day we have with him because we have learned just how precious each and every moment is. He has been granted a Dream from Dreams Come True and we are all looking forward to the fun break it will give us all away from home, school and the doctors. That is it – that is pretty much Zach’s journey in a nutshell – with more to come I’m sure.