April is celebrated nationwide as Donate Life Month. National Donate Life Month was instituted by Donate Life America and its partnering organizations in 2003 and features an entire month of local, regional and national activities to help encourage Americans to register as organ and tissue donors, and to celebrate those who have saved lives through the gift of organ and tissue donation.
This month, Lilah Kate Joiner’s family and friends will undoubtedly be promoting donor awareness as a way to thank the two living donors who stepped up and selflessly donated the partial liver and kidney that saved the little girl’s life during the summer of 2018.
Lilah Kate was born in Jackson, Mississippi, in September 2015. But it was before Lilah Kate ever entered this world that her parents, Katherin and Tanner, knew their baby would be born with serious health challenges. At Katherin’s 30-week pregnancy check it was discovered the baby she was carrying had Autosomal Recessive Polycystic Kidney Disease (ARPKD), which is a rare genetic condition that causes cysts to develop in the kidneys resulting in loss of function and the failure of other organs. A specialist told the couple the baby would likely only live one hour after being born -- if she even survived until that point. Katherin and Tanner were devastated but tried to remain positive for many reasons including their daughter Makenzie who was excited to meet her new baby sister.
When Lilah Kate decided to make her arrival, she spent three weeks in the Neonatal Intensive Care Unit (NICU) at the University of Mississippi Medical Center in Jackson. They were thrilled to bring Lilah Kate home in early December and according to Katherin, their beautiful baby girl was doing great. Just as the family was getting settled into their routine at home, Tanner was involved in a fatal automobile accident. Katherin’s world had turned upside down twice in a matter of weeks. But she did what she could do and stayed focused on the girls’ needs, including Lilah Kate’s extensive medical care.
Lilah Kate had physical and occupational therapy every week with visits from early intervention professionals who came to their home. She has had multiple surgeries, procedures, lab work and hospitalizations. ARPKD affects more than just the kidneys and by this point, Lilah Kate’s liver was so damaged it would need to be replaced as well. According to Katherin, “Lilah Kate gave us so many scares but proved over and over again she was a fighter.”
After much research and many conversations, Katherin decided to travel to UPMC Children’s Hospital of Pittsburgh due to their positive outcomes with multiple organ transplants in children. The trip from Birmingham to Pittsburgh was an 11-hour, one-way drive covering more than 750 miles. Unknown to her at the time, Katherin would be making this trip many times.
During their first trip to UPMC for Lilah Kate’s transplant evaluation, a transplant social worker introduced Katherin to the Children’s Organ Transplant Association (COTA) and suggested she reach out to learn more about how COTA might be able to help. Katherin called COTA on June 28, 2017, and started to breathe easier.
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
Lilah Kate was officially listed on the national transplant registry for a liver and a kidney on July 31, 2017. Donate Life America, a nonprofit organization that works to increase the number of donated organs and tissues, provides education about living donation and manages the National Donate Life Registry (RegisterMe.org) where individuals can register to be organ and tissue donors.
“As a widowed mom with a child who has many medical needs, I worried so much about the financial strain Lilah’s liver and kidney transplants would put on our family,” Katherin said. “After my first call to COTA I immediately felt relieved about everything and I started to breathe a little easier. COTA has allowed me to start dreaming about both of my daughters’ futures knowing that funds for transplant-related expenses and COTA’s guidance and support are with us now and will continue to be … for a lifetime.”
Nationwide, April is the month that is dedicated to raising awareness about the need for registered organ and tissue donors. Many COTA families are waiting for life-saving transplants like Lilah Kate received. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor. Every day 20 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives.
No comments:
Post a Comment