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Our Story

Hi! Thanks for taking a moment to check out our website. To start, I would like to introduce you to our family. I am Emily, my husband is Zack, we have been married just over 4 years and in January 2017 we welcomed our beautiful daughter, Rilynn. We wanted to share just how appreciative we are for each and every prayer, financial gift, or word of encouragement throughout Rilynn's journey with ARPKD and most recent diagnosis of Heptoblastoma. Rilynn was born with auto recessive polycystic kidney disease (ARPKD). She had both her kidneys removed at a week old and has spent all of her life on diaylsis, 12 hours a day currently. Once she met weight goals and we found an amazing living kidney donor, Apiffany, we had a date set for her kidney transplant. Only a few short weeks before they were to undergo the surgery, we found some cysts on Rilynn's liver. A biopsy confirmed they were cancerous. Rilynn is now undergoing chemotherapy and has been listed for a liver transplant as well. She has completed 3 rounds of chemo so far and will continue until she recieves a call that they found a match for her liver transplant. Once she recieved her liver she will then have to complete 2 more rounds of kidney toxic chemo before she can recieve Apiffany's kidney. Its been a long journey from kidney disease to heptoblastoma and going from what we thought was one transplant to realizing she now needs two. A liver transplant is normally a cure for heptoblastoma as long as the cancer has not spread however, she will need anti rejection medicine for the rest of her life, as she will also need with her new kidney.

A liver transplant typically last a lot longer than a kidney however, as Rilynn is so young, she will probably need another in her lifetime. A kidney transplant is a treatment option that typically lasts 10 to 15 years until she would either have to return to dialysis or recieve another transplant. 100% of funds raised for COTA in honor of Rilynn assist with transplant-related expenses and COTA provides support to its families and patients for a LIFETIME. We hope to raise enough money to support Rilynn into adulthood and ease her financial burdens as she one days starts her own family and has a career that may have to be on hold at certain times to take care of her health. We cannot express enough how thankful we are to all who have donated and helped ease the finanical worries at this time. To learn more about our story view the blog posts below! :)

 

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.

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