2016 sucked.  Auguest 24th to be exect.  Ben was in the Cincinnati Children’s Hospital after aa 6 month long ordeal and was diagnosed with Autoimmune Hepititis, a disorder of the immune system that causes it to attack his liver.  I won’t go into the very long story (yet) but that day we found out he was not in good shape, at least not on the inside.  You couldn’t seen it on him so it was even more shocking to hear the news. He looked like a normal kid in every way at that point, but his liver was failing due to his own body.  It wasn’t long after that that we heard the word transplant. 

And now he’s on the list.  Waiting.  And waiting.  And waiting.

We’ve spent the last few months digesting this as best we can.  I don’t think any parent can really understand what is going to happen, even with all the meetings and the information and the fantastic hospital, doctors and support teams.  It just doesn’t seem real, even now.  Even with the hospital visits, the tests, the events, the fundraising, the discusions and the prayers.  Just doesn’t seem real.

The kid is so amazing.  He continues on as if nothing is wrong, being a 16 year old boy.  Playing the drums, talking about girls, learning to drive…all the things that makes him normal.  And yet his body isn’t.  I don’t know what goes on in his head but when we talk about it, he has no fear.  I don’t know if that is innocence or faith, probably both.  But it’s admirable and amazing and it makes a parent more proud than I would have imagined.  He’s stronger than me.

We don’t have an update on when the transplant will happen except to say we are pretty darn sure it will be in 2019 which is both scary and exciting to finally be moving past this. Ben can’t do a lot of stuff right now and he’s missed a lot of opportunities (he was nominated and asked to tour Europe and represent KY playing drums but couldn’t because he can’t fly, and he missed performing with his high school band at Disney this year) and we don’t want this to continue. A new liver will not only save his life and let him live longer than a few more years, but actually let him live his life like any person should – full of adventure and experiences.  Without the fear he doesn’t seem to have anyway.  Just amazing.

Thanks for considering him.

 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.