If you have met Isaac, you have probably heard his laugh. It is contagious and loud and makes even the grumpiest of us want to smile. He has probably also given you a kiss, or a big hug, or told you you’re a great person, or that he thinks your shoes are pretty cool. He is very loyal, and has consistently loved motorcycles, dragons, the color red and spiderman for as long as I can remember. He carries with him the most impactful presence of any 42″ person I have ever met. 

 

Isaac was born with a genetic disorder called Fanconi Anemia, and in addition to needing a kidney, has had more than 14 surgeries to date, as well as a bone marrow transplant when he was 5. He is considered a high risk transplant patient. Our local team of doctors have been fantastic, but due to Isaac’s other medical complexities, they feel strongly that he should be transplanted at a specialty center in Cincinnati, Ohio. So Isaac will be transplanted and spend his recovery time out-of-state, until our medical team there feels he is stable enough to come home (on average, 6 months). 

 

Isaac just turned 9 in October. He is doing 2st grade online this year at our local elementary school, which actually works out pretty well for him with his limited bits of energy. He would definitely say he wants to go back, though. He is our most extroverted and charasmatic family member by far!

 

This has been a MUCH longer journey than we had anticipated as we have waited for a transplant. Isaac LOVES to run and ride his bike and jump around and play and I cant really remember the last time he hasn’t had to pace himself when he does these things, or just refuse to do them all together. He often takes long 3+ hour afternoon naps, his appetite has been pretty nonexistent for over a year now – declining food, just nibbling or not eating at all (normal for late stage kidney disease), he feels neauseous a lot etc…We have gotten used to working life around what he is currently capable of and have adjusted our daily life to work around his unpredictable nap schedules and bursts of energy, but we hope for the day when this wont be the case anymore. We are very grateful that we have a donor lined up for Isaac. He was originally scheduled to be transplanted mid November, but in 2020 fashion, that has been delayed, hopefully just until after the holidays!