Lilah Kate Joiner is the daughter of Katherin (KD) Wilcher Joiner and the late Tanner (TJ) Joiner. She was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD) a few weeks prior to birth. Her parents were told by a specialist at 30 weeks prenatally, that she would only live for about an hour after birth (if she even survived to that point.) When Lilah Kate decided to make her arrival in September 2015, she spent 3 weeks in the NICU at UMC in Jackson, MS. She got to go home in early October and was on a few medicines, but she was doing great. Just a few days after bringing her home from the hospital, her father was involved in a fatal automobile accident. She was admitted to Batson’s for a respiratory virus that following December at 3 months old. After a month of her being there on life support and multiple nights no one was sure she would make it through….she was finally flown to Children’s of Alabama in Birmingham. And on February 5, 2016, she went into a major surgery to have both of her polycystic kidneys removed, hernias repaired, and a g-tube placed for feedings. Days after that surgery, she was finally able to come off the ventilator. When she got to go home from that very long hospital stay, she was on peritoneal dialysis every night at home in MS until she had complications with it. A few days after her first birthday, she went into yet another surgery to have a catheter placed in her chest and the one from her stomach removed. She had to do hemodialysis 4 times a week at Children’s of Alabama up until the end of July 2018. She also had physical and occupational therapy every week and had early intervention to see her at her home. She has had multiple surgeries, procedures, and hospitalizations. ARPKD affects more than just the kidneys, and Lilah’s liver, unfortunately, was already affected causing her to need a liver transplant as well as kidney. She was evaluated at Children’s of Pittsburgh-UPMC for kidney and liver transplants and the surgeons there decided to place her on the transplant waiting list on July 31, 2017.
The first and only donors tested both turned out to be a match for Lilah and she received a living donor liver transplant on July 31, 2018 from Joey Smith and a living donor kidney transplant on August 1, 2018 from Missy Wilcher Lathem. So far, both organs have been working perfectly and we pray they last for a very long time! Lilah is finally getting to live life as a “normal” toddler without being hooked up to a machine and without the restrictions she had before!
With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity based in Indiana that helps raise money for transplant patients like Lilah Kate. People have asked and yes, Lilah does have insurance, however only one will apply in Pittsburgh leaving the family to pay for a percentage of the bills. AAlso, unfortunately, her new organs will not last forever and at some point and time in her life, Lilah will have to go through all of this again. The good thing is, 100% of the funds that are raised for COTA are available for the patient’s lifetime to help with transplant related expenses.
This page will have updates on her and will be dedicated to fundraising for COTA in honor of Lilah Kate.
Lilah’s family greatly appreciates all of the donations, the love, every single prayer, and amount of support shown for their family these past 3 years. Please continue to pray for all of them as well as her donors and their families.