McKenzie is a bright, loving four-year-old who will turn five at the end of October. She recently underwent heart surgery on September 23 and, despite everything, remains in good spirits. Her strength and resilience have been an inspiration to our entire family. We’re relieved that her heart repair was successful—her ASD was repaired, her heart has already shrunk, and she’s been cleared from a cardiac standpoint. We left the hospital today and are staying with family near Albany Med so McKenzie can attend several appointments in the coming weeks to monitor her GI issues.

However, McKenzie’s journey is far from over. Genetic testing has revealed two heterozygous gene mutations, leading to a rare protein deletion disorder found in only 0.00088% of people. Because of this, she’s been diagnosed with cystic kidney disease, cystic liver disease, cirrhosis and fibrosis of the liver, and a biliary disease causing her ducts to be dilated or distended. She also has portal venous hypertension in her liver, which recently caused episodes of vomiting blood and required a blood transfusion. Soon, we’ll need to travel to NYC to meet with genetics and GI specialists to find answers, a diagnosis, and hopefully a treatment plan for her rare conditions.

Our family is doing our best to support McKenzie through this. We have five children, including a three-year-old son who isn’t used to being away from his mom. I coach my son’s football team, and balancing work, travel, and caring for all our kids has been overwhelming. Our other children are worried about their little sister and are trying to stay strong for her. The financial strain is significant, as my girlfriend Brianna and I both have to take time off work, which means we’ll be without income during this period. On top of that, we’re facing out-of-pocket costs for prescriptions that insurance won’t cover, as well as travel and hotel expenses.

We’ve always tried to give back to our community in any way we can. Brianna teaches daycare, helping local families every day, and I coach baseball and football in our town. Now, as we face this difficult time, we’re asking for help so we can focus on McKenzie’s health and keep our family together.

McKenzie is the sweetest kid, always thinking of others even while she’s going through so much. She loves her three dogs—a French bulldog, an English bulldog, and a Boston terrier—and misses them dearly while she’s away. She’s a huge fan of Disney princesses and loves to dress up like them, bringing a little magic to every day. Please continue to keep McKenzie in your thoughts as we search for answers and hope for her future. We’re grateful for any support as we navigate this challenging journey.