{"id":14,"date":"2024-09-27T18:14:56","date_gmt":"2024-09-27T18:14:56","guid":{"rendered":"https:\/\/cota1.wpengine.com\/cloningsite\/?page_id=14"},"modified":"2025-09-29T20:01:42","modified_gmt":"2025-09-29T20:01:42","slug":"our-story","status":"publish","type":"page","link":"https:\/\/cota.org\/cotaforkadenceskidney\/our-story\/","title":{"rendered":"Our Story"},"content":{"rendered":"\n<p>Kadence was diagnosed with Alport Syndrome by biopsy at age 5.&nbsp;<\/p>\n\n\n\n<p>Alport Syndrome is an X-Chromosome mutation you are born with, and Kadence\u2019s frame shift is rare and aggressive. Alport Syndrome has also claimed a significant amount of Kadence\u2019s 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.\u00a0<\/p>\n\n\n\n<p>Kadence has devoted his life to participating in multiple research studies hoping to find an effective treatment and\/or cure, but that was not&nbsp;the case.&nbsp;<\/p>\n\n\n\n<p>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.<\/p>\n\n\n\n<p>Kadence is the youngest of four sisters. &nbsp;As you can imagine, his sisters are very protective and adore their baby brother. Their love for him is as relentless as Alport Syndrome.&nbsp;<\/p>\n\n\n\n<p>It is my life\u2019s joy to watch Kadence grow&nbsp;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.&nbsp;<\/p>\n\n\n\n<p>Kadence\u00a0lives knowing faithfully God will carry him through this and all other transplants\u00a0in his future. As we\u2019ve 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 &#8211; it\u2019s EVERYTHING\u00a0you 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.\u00a0<\/p>\n\n\n\n<p>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.&nbsp;Our community has rallied around Kadence and our family in&nbsp;prayer. Their&nbsp;love, help and prayers give us the strength to focus on Kadence\u2019s care.&nbsp;<\/p>\n\n\n\n<p>Please keep spreading the news &#8211; we are actively looking for a living kidney donor for Kadence.&nbsp;<\/p>\n\n\n\n<p>All of your kindness is greatly appreciated and a blessing we will never forget.&nbsp;<\/p>\n\n\n\n<p>Thank you from our entire family and God bless you and yours.&nbsp;<\/p>\n\n\n\n<p>Special thanks to the incredible team working with COTA to help us navigate these uncharted waters.&nbsp;<\/p>\n\n\n\n<p>Sincerely,<\/p>\n\n\n\n<p>Charissa Hailey<\/p>\n\n\n\n<p>The Children\u2019s 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\u2019s 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\u2019s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Kadence was diagnosed with Alport Syndrome by biopsy at age 5.&nbsp; Alport Syndrome is an X-Chromosome mutation you are born with, and Kadence\u2019s frame shift is rare and aggressive. Alport Syndrome has also claimed a significant amount of Kadence\u2019s hearing, requiring hearing aids to get him by. This also has the ability to cause some [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":95,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-14","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v26.6 (Yoast SEO v26.6) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Our Story - COTA for Kadence&#039;s Kidney<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cota.org\/cotaforkadenceskidney\/our-story\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Our Story\" \/>\n<meta property=\"og:description\" content=\"Kadence was diagnosed with Alport Syndrome by biopsy at age 5.&nbsp; Alport Syndrome is an X-Chromosome mutation you are born with, and Kadence\u2019s frame shift is rare and aggressive. 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