COTA for Kadence's Kidney

Our Story

Kadence was diagnosed with Alport Syndrome by biopsy at age 5. 

Alport Syndrome is an X-Chromosome mutation you are born with, and Kadence’s frame shift is rare and aggressive. Alport Syndrome has also claimed a significant amount of Kadence’s hearing, requiring hearing aids to get him by. This also has the ability to cause some loss of eyesight. So far, he has been fortunate in that aspect, but we watch closely. 

Kadence has devoted his life to participating in multiple research studies hoping to find an effective treatment and/or cure, but that was not the case. 

Kadence is a 16-year-old sophomore at Rockhurst High School in Kansas City, who needs his first kidney transplant. He will require multiple transplants in his lifetime due to Alport Syndrome. As the only male in his family, he is considered a carrier of Alport Syndrome.

Kadence is the youngest of four sisters.  As you can imagine, his sisters are very protective and adore their baby brother. Their love for him is as relentless as Alport Syndrome. 

It is my life’s joy to watch Kadence grow into such a kind, loving, courageous young man. He truly is living as a young man for others. He loves family, friends, theater, music, driving boats, the beach, swimming, campfires, movies, and trips to the mall with friends, but his love for his niece and nephew, as well as his best fur friend Milo, and the Lord Jesus Christ is everything to him. 

Kadence lives knowing faithfully God will carry him through this and all other transplants in his future. As we’ve watched Kadence enter into End Stage Kidney Failure, it has torn at every part of our sense of security, simply leaving me feeling helpless, frightened, frustrated, exhausted, and fearful of all the what ifs Kadence faces daily. I cannot imagine the fatigue, muscle cramps, fear, and pain he is living with – it’s EVERYTHING you never want to watch your child go through. As a family, we use a lot of comedy to get us through it, knowing each day Kadence is with us is a blessing. 

We are fortunate enough to live in an exceptional community of beautiful believers who volunteer with COTA to provide all the support one could ask for in their lifetime. Our community has rallied around Kadence and our family in prayer. Their love, help and prayers give us the strength to focus on Kadence’s care. 

Please keep spreading the news – we are actively looking for a living kidney donor for Kadence. 

All of your kindness is greatly appreciated and a blessing we will never forget. 

Thank you from our entire family and God bless you and yours. 

Special thanks to the incredible team working with COTA to help us navigate these uncharted waters. 

Sincerely,

Charissa Hailey

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.