Peytons journey with GSD

Dec 22, 2015 My 9 month old son Peyton was diagnosed with a rare genetic disorder called Glycogen Storage Disease Type 3, which affects his liver, muscles and blood sugar. GSD is a rare disease that affects only 1 in 100,000 people.
My world was turned upside down knowing my son would have to live with GSD for the rest of his life. 3am he suffered a seizure which led  to me calling the ambulance hoping for the best but thinking the worse.  Admitted with a extremely low blood sugar of 22 we knew it wasn't good. Transferred between 3 different hospital totalling a 26 day stay, this was just the beginning of baby Peytons journey. GSD was undetected for so long due to him passing all his milestone screenings....this was and still is a hard pill to swallow.
With GSD Type 3 affecting mainly his liver he can't release the storage of glucose in his liver causing him to have an enlarged liver, with an abnornal protruding belly. He also has low blood sugar with something as small as a common cold could cause his blood sugar to become critically low. This disease if not maintained could also cause Cirrhosis of the liver as well as heart and muscle disfunction.

Peyton had to get an Nasogastric Tube(NG Tube) placed in his stomach through his nose, to ensure he would get the nutrients needed to maintain his blood sugar and muscle tone.  He´s on a strick feeding regimine and has to take his nutrients and medicines multiple times a day. Working full-time was no longer an option, so my hours were shortened.
Every 3 hrs his blood sugar is checked before his feeding, then he gets a mix of  Soy formula  with a tblspn of cornstarch; which is a backup source of energy to keep his sugars stable. He takes Beneprotein powder 3x's a day(which helps maintain his muslces.) He takes a seizure medicine 2x's a day and blood pressure medicine once a day. On top of following up with multiple specialist Peyton is also scheduled for surgery next month. Did I mention no sugar for Peyton, which means something as small as a piece of gum would drop his blood sugar dangerously low.
The money will be used for Peytons ongoing medical expenses, travel expenses, raising awareness, help fund Glycosade-a superstarch thats been tested and used to cured GSD in mice (needs money for FDA approval), continuous follow up care, everday feeding materials and daily care.  With GSD type 3  being so rare,  Peyton has to see a Metabolic Specialist  located hours away from our home. My son means the world to me and my goal is to seek out the best specialist, so that needing a liver transplant will never be an option.  No words to express how much this will mean to me, my son Peyton,  and his big sister Lyriq. The smallest gesture can make the biggest impact!
#curegsdhope