“The Children’s Organ Transplant Association (COTA) provided so much hope to us by simply being by our side during some very dark days. COTA assisted us with transplant-related expenses and every person at COTA was very patient with us since this was all new. COTA emailed and called us to check on Itzel and on Read More

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Bone Marrow Transplant Recipient

Posted on November 1st, 2019

 

November 1, 2019 As the chill of November sets in, many thoughts turn to holiday planning, Thanksgiving preparations and gratitude. A Missouri family’s ‘Thanksgiving’ will come a bit earlier this month on November 17th as they celebrate their daughter’s two-year ‘transplantaversary’ and remember with gratitude the selfless family who donated their loved one’s life-saving organ. A week later the Fitzmaurice’s large Thanksgiving table will be surrounded by loved ones who truly embrace the essence of gratitude.

Reilly Fitzmaurice of St. Louis, Missouri, was in the middle of her 7th grade soccer season in October 2016 when she, and her parents, Amy and Brian, noticed something was wrong. Reilly missed almost a week of school that month complaining that she just did not feel well and was running a low-grade fever. Amy and Brian assumed she was fighting a flu bug. She started feeling a little better and returned to school on a Friday and played in her team’s soccer game that evening. But over the weekend she started struggling to take deep breaths and her parents noticed how enlarged her midsection had become. The family’s pediatrician was called on Monday. An appointment was made on Tuesday (October 26th) and the doctor, who was immediately concerned with her enlarged spleen, ordered blood work to be done.

Reilly presented several diagnostic challenges to many medical professionals who were consulted with over the coming weeks. More tests were done and more blood was drawn. Then came the shocking news. A liver specialist who had been called in to review the test results told Amy and Brian that Reilly’s liver was completely scarred and would not be able to heal itself. Reilly was diagnosed with Autoimmune Hepatitis Cirrhosis. With this disease something triggers the body’s immune system and the body responds by attacking its own liver and eventually destroying it. Reilly’s enlarged abdomen was a result of her enlarged spleen and from another complication of liver cirrhosis called ascites.

Reilly needed a life-saving liver transplant and she needed it soon. Seemingly overnight Reilly went from being a healthy and vibrant athlete to a child who needed an organ transplant to live. The entire Fitzmaurice family was in a state of disbelief including older brothers Evan, Cameron and Brendan and younger siblings Brian Jr., Donovan and McKenzie.

“As a family our lives were turned upside down with Reilly’s sudden diagnosis,” said Amy. “We were also shocked by the fact that we would likely have to raise money to help pay for the medical costs our medical insurance would not cover.”

Brian spent some time reaching several organizations that might be able to help the family financially. During this time a social worker at St. Louis Children’s Hospital suggested they reach out to the Children’s Organ Transplant Association (COTA) to learn more about fundraising for transplant-related expenses.

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 community team of trained volunteers. On November 1, 2016, Brian called COTA’s 800 number and several weeks later, their formal agreement to become a COTA family was received at the organization’s Indiana, headquarters.

Reilly was added to the liver transplant waiting list in December. According to Brian, it took a couple of months to get her listed for a new liver due to complications with the family’s medical insurance, which they were not allowed to change until the month of December.

On February 9, 2017, a COTA fundraising specialist travelled to St. Louis to train the volunteers for the COTA campaign in honor of Team Reilly F. 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. This group of family members and friends, i.e. COTA Miracle Makers, quickly got to work organizing fundraisers to help with mounting transplant-related expenses.

2017 was a challenging year for the Fitzmaurice family. They were juggling busy, sports-filled lives of their six other children (some of them playing college sports a distance from home) while trying to keep their family business running and balancing all of this with Reilly’s medical needs, periodic infections, appointments and medications. Due to her health status while waiting for a new liver, Reilly was unable to return to school and was enrolled in a Home Bound program to keep her education on track.

2017 also proved to be a very successful year for the many COTA Miracle Makers who quickly got to work raising funds for transplant-related expenses. In a seemingly short amount of time, these dedicated friends and family members raised more than $185,000 for COTA in honor of Team Reilly F. With the family’s immense stressors surrounding Reilly’s need for a new liver, this was definitely a ray of hope for the Fitzmaurices.

“COTA provided a way for people to help during these difficult days of waiting,” said Amy and Brian. “Our friends and family members were feeling helpless and COTA became the perfect way people could plug in and make a life-saving difference. We felt helpless, too, because we were not able to help our daughter. COTA gave us peace of mind in very important ways.”

Amy and Brian will never forget the elation they felt on November 16, 2017, when The Call came — a new liver was available for Reilly. She received her life-saving liver transplant at St. Louis Children’s on November 17th. The Rally for Reilley Facebook page shared this update for their many followers, “We just talked to the chief surgeon with Reilly’s transplant team. She said the surgery went well and Reilly did well during the procedure. They are in the process of closing the incision and should be done around 10 p.m. After Reilly gets out of surgery she will remain sedated and be in the ICU for the next 48 hours. The first 48 hours are the most critical for monitoring Reilly’s recovery from surgery and initial phases of healing from the liver transplant. Thank you everyone for your prayers, supportive messages and well wishes!”

Brian and Amy will never forget the donor family who gave them the ultimate gift by saving Reilly’s life. They are also extremely grateful for COTA. They said, “We are blessed in many ways, and we will always be grateful to COTA for being on this journey with us.”

“In the matter of one year’s time, our lives turned upside down. Our healthy and athletic teenager was playing volleyball and soccer one week and was sent to see an abdominal specialist the next. We had never even heard of the Children’s Organ Transplant Association (COTA), but in a very short amount of time COTA became our source of hope. Having to raise money to keep your child alive is the most humbling circumstance we have ever found ourselves in. We do not know what the future holds, but we are so grateful to know COTA will be with us each step of the way … for a lifetime.”

Reilly’s post-transplant life is starting to look like her pre-transplant life. She has returned to school and has resumed many of her favorite activities including shopping for clothes and spending time with her friends and many brothers and sister. There are some days this teenager feels tired and other days she feels great but gets tired of her mom asking her how she is feeling. When asked what her hope for the future is, Reilly said, “To live life to the fullest. To take life one day at a time and continue to get healthier and stronger each day. And to always remember to be grateful.”

This year the Fitzmaurice Thanksgiving table will be full of grateful people and their Thanksgiving blessing will likely include a chorus of thanks for Reilly’s donor angel for whom they are forever grateful.

Happy Thanksgiving Fitzmaurice Family from your COTA Family!