“Faith is taking the first step, even when you don’t see the whole staircase.” 

A little over a year ago, after our hearts were shattered to pieces by Gavin’s diagnosis, we had a phone call with Dr. Kevin Strauss from the Clinic for Special Children to discuss Gavin’s disorder and it’s treatment options. After only two phone calls with Dr. Strauss, we took a leap of faith and decided to do a liver transplant in hopes of helping him. Without real scientific proof we went “all in”… we moved our entire family across the country without any guarantee of positive outcomes. Without proof, we did it anyway. We had to. Gavin deserved it. Every child diagnosed with this disorder and who will be diagnosed with this disorder deserved it. 

The next few months before the transplant and after were possibly some of the hardest days of our lives. So many ups and downs. So many complications and scary moments. All to try to help our boy. We were told countless times by doctors, “This may not work. There is no proof. Prepare yourself for that.” So we did. We had hope, but we prepared ourselves for if the transplant didn’t work. We expected to be heartbroken again and we were ok with that as long as we knew we tried to help him. 

Yesterday, the results of the blood ganglioside tests came back. When I opened the email from Dr. Strauss I was afraid to read it, thinking my heart was about to be crushed. 

The first lines read:

“I just recieved the results of ganglioside testing from the lab in Georgia. Gavin’s liver is producing gangliosides! There is now circulating GM3 in the blood and on the surface of red blood cells.” 

WHAT?!?! OH MY GOSH!! IT WORKED!!! 

Gavin’s liver is now producing Gangliosides…. what he previously was unable to produce before transplant! We are all still in a state of shock!! Our faith and determination to help Gavin paid off. We don’t know how much this will help Gavin, but we do now know the sky could indeed be the limit. We have already seen so many changes in him and we hope, with the accumulation of Gangliosides over time, we will continue to see more. 

We want to thank all of you for all your prayers. I truly believe this wouldn’t have happened without our army of prayer warriors. We also owe so many thanks to Gavin’s liver donor, Michelle Shark. We wouldn’t have been able to do this without her selfless act. We love you to the moon, Michelle. 

We are also so grateful for Dr. Strauss and Children’s Hospital of Pittsburgh of UPMC and their liver transplant team for taking a chance on Gavin. While others said “This may not work.” They said “This may not work, but there is a good enough chance that it could so it’s worth a try.” 

It may have seemed crazy to do something like this without the proof… to be the first one ever for this disorder to have a liver transplant, but sometimes in this life you just have to believe and have faith. Just because you can’t see the rest of the staircase doesn’t mean it isn’t there. Never give up, even when others doubt you. 

YOU GUYS!! IT WORKED!! 

(Oh and by the way, Gavin’s liver numbers have gone down again and he is being discharged from the hospital!!)