COTA for Team Caleb and Crosby

Our Story

Thank you for visiting this special COTA webpage, dedicated to raising funds in honor of brothers Caleb and Crosby and providing support to the Kachur family.

From this page, you can access medical updates from Kristin and Kevin, view photos and videos or make a secure donation all in one place. Please note that 100% of the proceeds raised for COTA in honor of Team Caleb and Crosby will assist with transplant-related expenses.

The Kachur’s medical journey began six months after their middle son Caleb was born in July 2016. In late January 2017, Caleb was unexpectedly air flighted to Nationwide Children’s Hospital in Columbus as a result of several weeks of severe cold and flu-like symptoms. Since that five-day hospital stay, the Kachur family was entering a “new normal.” 

Doctors learned that Caleb had pneumonia (the first of three bouts), as well as several other viruses – and his white blood cell count (specifically neutrophils) was dangerously low. (Neutrophils’ role in the body are to fight bacteria.) This evolved into a long diagnosis period. 

In February 2017, the hematology doctors confirmed Caleb had neutropenia (chronically low neutrophil count), which alone required lifelong bone marrow shots. 

Neutropenia on its own without the presence of cancer is very rare (about 1 in 10 million)…. and yet this was just the beginning. 

Fast forward to May 2017. Caleb was again life flighted to Nationwide Hospital with pneumonia for his fifth stay. More testing revealed a highly rare deficiency of immunoglobulins in Caleb’s blood. Immunoglobulins are antibodies found mainly in the plasma cells, which neutralize viruses and bacteria- and Caleb’s blood was deficient in 4 of the 5 types. A bone marrow biopsy showed a normal presence of “mother cells”; but ones lacking proper function, cell memory or white blood cell reproduction. Meaning that Caleb’s weak immune system was not able to fight any bacteria or viruses on its own…even if had come in contact with them before.

Caleb also started a monthly IVIG transfusion that May (intra venous immuno globulin), which was effective in keeping him out of the hospital. His b-cells did not naturally make IG, which is a crucial part of the immune system. After a few months of IVIG treatments, the diagnosis finally came. At the end of June 2017, just before his first birthday, Caleb was diagnosed with an astoundingly rare (about 60 cases worldwide) genetic syndrome called ICF. 

ICF stands for Immunodeficiency Centromeric instability Facial Anomalies Syndrome. ICF is typically characterized by immune system malfunction, including neutropenia and low immunoglobulins, constant respiratory infections (particularly pneumonia), learning/mental disabilities, developmental delays and GI tract issues. A greatly shortened lifespan (~ age 12) has also been found due to continued and irreparable respiratory damage. 

The recommended long-term treatment to give the best chance at a healthy life is a bone marrow transplant (BMT). 

Oldest brother Colten, age 4 at the time, was identified as a perfect 10/10 match for Caleb’s transplant, which offers the best success rate with a sibling donor! Caleb had his transplant in May 2018, with minimal complications aside from a virus that kept him confined to his room for most of his hospital stay. He was able to go home in July of that year. Six months after transplant day, in early December, Caleb did face another stem cell “boost” due to concerns about him losing his new graft (immune system). Colten once again donated his cells, but it was much tougher on him because he was awake for the entire procedure. 

Caleb’s immune system remained “mixed” between patient and donor cells after the boost, but he remained stable and continued his path to healing. Today, Caleb is in good health and started Kindergarten this year. He enjoys coloring, drawing, playing pretend and baking with mom. He is an avid and talented artist. 

And yet, this “new normal” the Kachur’s began in 2018 continues even now into the fall of 2022. Five years later, and the Kachur’s medical journey continues. The isolation, the questions, the medications, the sleepless nights… continue. The story never really “ended.” On June 23, 2021, Kevin and Kristin’s third son, Crosby, was born. On July 7,  when he was two weeks old, they got the call delivering the disappointing news. Crosby also had ICF Syndrome-  and would need a bone marrow transplant at Nationwide in Spring 2022.

Crosby’s health has unfortunately presented some new challenges, ones that are not unique to ICF Syndrome, but ones Caleb never experienced. Over the first few months of his life, Crosby greatly struggled to gain weight and thrive… lacking an interest in eating, not taking enough bottles, struggling with heavy/raspy breathing, and constantly vomiting seven to eight times a day. Over the course of that time, and MANY tests at Children’s in GI, ENT, BMT and radiology, doctors chalked up his symptoms to severe GERD, dysphasia (trouble swallowing), aspiration (liquid going down into the airway) and, well, that he has ICF. 

The everyday stress/worry of trying to meet a bottle count and calorie goal became far too difficult… and the goal was unobtainable. Ultimately, doctors placed an NG (nasal gastric) feeding tube into his stomach after an NJ (nasal jejunum) feeding tube proved ineffective.

Amidst this stress, Kevin and Kristin received their first bit of good news- a donor for Crosby was found! A selfless young man from Poland was a confirmed 10/10 match, and despite a tentative hospital admission and transplant date, he never wavered in his commitment to donate. 

Crosby received an extra round of strong chemo due to having an unrelated donor, as well as to prevent the need for a stem cell “boost” or loss of his graft (new immune system) like Caleb. As a result, he has experienced every potential complication, including venal occlusive disease (VOD), graft vs host disease (GVHD) and TMA (Thrombotic microangiopathies), which he is still healing from today. All of this added up to a solid four month hospital stay, two stays in the PICU, and a dangerous GI bleed… followed by an extended outpatient stay across the street from the hospital. Which means that Crosby has been away from home now for about six months. 

However, the Kachur’s are not alone in this diagnosis this time around. Caleb was the first discovered in the USA, but he certainly wasn’t the last. They are now able to connect with a very small community of ICF parents around the world via social media, which has been healing and encouraging.
Through it all, the Kachur family tries to focus on the simple moments of being together as a family of five on the weekends, with the goal of being together around the table at home come Thanksgiving 2022.

Kevin and Kristin deeply thank you for your support, words of hope and encouragement, and reaching out to see how you can help! You are truly God’s angels on Earth.

*The cost of caring for a child with a life-threatening condition can build significantly over months and years, well beyond a transplant or life-saving procedure. In addition to immediate treatment and hospital bills, long-term expenses include medications, transportation, lodging, unexpected complications, additional treatments and more. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for families facing these transplant-related expenses. All donations are tax deductible to the fullest extent of the law, and you can be assured that 100% of your generous gift will go to COTA in honor of Caleb and Crosby to assist with transplant-related expenses.