A New Liver for Nico

Anyone that has the been fortunate enough to cross Nico’s path in his 3 short years will tell you, he is one unique and special kid. His little smile is infectious.

Like most kids his age he loves, footie jammies, trucks, camping, and his family. His memory is nothing short of remarkable and his sense of humor can get a chuckle out of even the hardest crowd. It is hard to put into words how Nico can draw the attention of the room without trying or even noticing sometimes.

However, unlike other kids, Nico has recently been diagnosed with a rare condition called Primary Sclerosing Cholangitis. This condition is rare in adults but even more rare in children, with a prevalence of 1.5 cases per 100,000 children.

Kyle and I have been fortunate to have an amazing support group in our family, friends, and team of doctors for the last 6 months as we’ve navigated our way to this diagnosis.

Unfortunately, after traveling to Colorado Children’s Hospital last week we were told Nico has End Stage Liver Disease and will require a liver transplant. As we process this information and new life path our goal is to keep our bright, happy, spirited boy not only heathy but also truly living his best life and continuing to be happy.

We are just beginning our journey but can expect another week in Colorado for an evaluation to get on the liver transplant list and then anywhere from 1 to 2 months in Colorado for the transplant itself and recovery. This will be followed by a lifetime of medication and medical follow ups.

In the near term, we will be making numerous trips to Colorado for continued testing, evaluation, liver transplant, and follow up appointments. Any donations will be greatly appreciated and will go towards medical expenses, travel, food, housing, and most likely a matchbox truck or two.

We know that we are surrounded by people near and far who love us. If you are not able to make a financial donation please leave a funny joke for Nico or a kind word for his loving parents. You all are amazing and we will be forever grateful. Any excess donations will be given to the Jadyn Fred Foundation, a foundation helping Montana families with travel and medical expenses.

Much Love from the Cicero Family.