Bloomington, Indiana — July 1, 2015- On the fourth day of July, America pauses to celebrate its freedom, and to celebrate the men and women who have ensured that freedom for more than 200 years. This July, a Colorado COTA Dad and Iraq veteran is thankful his son is alive and able to take part in the 4th of July celebrations — something that did not seem possible just a short time ago.
Kurt Darby served three tours of duty as a Marine in Iraq. But one of the biggest battles he ever faced was fighting for his son’s life.
At Katherine Darby’s six-month pregnancy check up, she and Kurt were told their baby had an immune deficiency known as X-Linked Hyper IgM Syndrome. This syndrome causes a person’s immune system to not work properly. Simply put, it meant the baby’s body could not fight infection. Once born, the baby’s only chance of survival was a bone marrow transplant (BMT).
Everett Darby was born on February 13, 2012. The baby was treated with IV immunoglobins from the age of four weeks old to try and maintain a level of coverage that would keep him healthy until he could undergo a BMT. Kurt and Katherine were told the transplant would allow Everett’s body to fix the genetic coding and make his body produce everything correctly. The hope was Everett would eventually be cured.
In April 2013 the time came to begin the one-year-old’s transplant workup. A transplant social worker at Children’s Hospital Colorado suggested Kurt and Katherine reach out to the Children’s Organ Transplant Association (COTA) to research the possibility of fundraising for some of the significant transplant-related expenses this young family would face.
“As Everett’s transplant journey began, we had no idea how we were going to be able to pay all of the costs. As soon as we called the COTA staff, we felt at peace. COTA gave us hope that we would be able to take care of Everett’s health issues instead of worrying about the immense financial burden of his life-saving transplant,” said Katherine and Kurt.
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers. A COTA fundraising specialist traveled to Colorado to meet with the COTA in honor of Everett D volunteers and walked them through the entire process.
On May 6, 2013, Everett entered Children’s Hospital Colorado with his family’s ultimate hope that he would walk out months later — cured. The toddler underwent 10 days of chemotherapy to get rid of his non-functioning immune system. Everett received three different types of chemotherapy drugs. He had a severe reaction to one of the drugs, which caused him to quit breathing and experience a seizure. Once he received the ‘all clear’ from this episode, on May 17th Everett received a life-saving infusion of donor stem cells.
There were long days for this family following the transplant. They watched his blood counts daily and waited for the new cells to take hold. Katie recalls, “While holding my fragile boy during this time, there were so many emotions, but I mostly remember feeling a sense of hope. Hope that he would live a long life. Hope that soon the IVs and the constant medical attention would be over. Hope that Everett would go to college. Hope that he would meet the love of his life and get married, and hope that he would one day raise children.”
Throughout the days of waiting, Everett needed infusions of red blood cells and platelets because his body was not producing those due to the chemotherapy. He was on a multitude of IV medications to keep him healthy and pain free during the process. Everett experienced mild graft versus host disease (GVHD), which caused very high fevers that frightened Katherine and Kurt. He also developed mucousitis that caused very painful sores in the baby’s mouth, throat and stomach.
However, once Everett’s cells engrafted, his counts increased rapidly. At only 58 days post-transplant, Everett was released from the hospital to a nearby ‘clean living’ apartment where Kurt and Katherine could begin to recapture some normalcy for their family.
Back home in Loveland, Colorado, the Darby’s friends were working tirelessly to plan and orchestrate COTA fundraising events. Garan Weilnau, a long-time friend and leader of the COTA fundraising effort said, “As a community of friends, we would do anything to help. Helping out in this capacity was the most hands-on thing I could do. I can’t be there to hold Everett’s hand or to hold Katherine’s hand, but I can be here making sure funds are raised and are available.”
At 100 days post transplant, Everett’s last IV medication was stopped and his central line was removed. In March 2014, Everett received his final dose of IVIG. His mediport was removed on April 15th and in May 2014, Everett began his vaccination schedule. This is the final step needed for Everett to be declared cured.
When asked if they felt they had witnessed a miracle at any step in their transplant journey, Katherine replied, “Everett thrived despite all of the obstacles he faced due to his bone marrow transplant. He wowed his doctors with quick engraftment of his donor cells and he continued to shock them with his amazing progress. It is indeed a miracle that Everett has flown through his recovery process with relative ease and lots of smiles.”
Everett has reached every milestone at or ahead of schedule, and Kurt and Katherine say they could not feel more blessed and hopeful for his future as a happy, healthy boy.
Enjoy the fireworks, Kurt and Everett … this year they are for both of you!
For more information about the Children’s Organ Transplant Association,
or to find a COTA family in your area, please email gro.a1534713280toc@m1534713280ik1534713280.