December 1, 2018 — December is the month when many focus on gifts. For one Tennessee adoptive and transplant family, December is the month to celebrate the ultimate gift — the gift of life. This family’s beautiful little girl will be celebrating her fifth birthday while this family of four celebrates Christmas. Both celebrations are made possible by another family, complete strangers, who chose to donate their child’s liver during the most difficult of circumstances.
Jesse and Nick Faris are no strangers to big gifts, the kind that come once in a lifetime to most people but that have come several times to this amazing couple with huge hearts and open arms. After waiting more than two years to adopt their first daughter, Jesse and Nick took custody of 16-month-old Rhet in her native country of Ethiopia in July 2011. It was an extraordinary gift … something the couple had been hoping for and praying about for a very long time. They did not think their life would ever be the same again, and they were right.
Jesse has been an avid blogger for quite some time sharing beautiful stories of raising Rhet amidst the backdrop of their beloved Memphis hometown. As a complete surprise to her many blog followers, on October 28, 2014, Jesse wrote in bold type, WE ARE ADOPTING AGAIN!!!
Her post that day said, Meet Brooklyn Faris! She is 10 months old in China. She has a condition called biliary atresia and is currently in liver failure. She needs a liver transplant ASAP! Pursuing adoption often means walking into the fear, pushing into the hard places, following God into the dark. We do not know how Brooklyn’s story will unfold but we do know she deserves a family that loves her, that will fight to get her, that will push through the hard for her. Every child deserves a family who will do that. We could spend our lives wondering if anyone will, or we can make bold choices …
Due to Brooklyn’s medically fragile status, the international adoption process moved quickly. So quickly that Jesse and Nick returned home to Memphis from China with Baby Brooklyn on the evening of January 24, 2015. On the morning of January 26th they had an appointment with the GI team at LeBonheur Children’s Hospital in Memphis. They took labs and did a quick check-up. Jesse and Nick were anxious to hear news about the medical ‘next steps’ with their already beloved and treasured Brooklyn. The Faris family’s journey to transplant and back has been full of joy and stress, but it is a story that Jesse has beautifully shared in this synopsis:
We knew Brooklyn would need a liver transplant when we adopted her from China in January 2015. Her initial diagnosis had given her a 50% chance of living four to six months, and we raced through the adoption paperwork to get her via a medical expedite. When we were accepted as her referral, she was 10 months old and weighed 10 pounds. When we took custody of her in China, she was 13 months and weighed 13 pounds. She was extremely jaundiced; people would stop us on the streets in China and comment on her appearance.
Upon returning home to Memphis, we took her to GI clinic at the local children’s hospital and learned shortly thereafter that our health insurance would not cover a pediatric liver transplant there. We would need to choose a program from a list provided by our insurance company. We chose Ann & Robert H. Lurie Children’s Hospital due to their excellence in the field of pediatric transplants, their proximity to Memphis (Chicago had the closest direct flights), and because we had friends in Chicago who could provide emotional support as well.
In February 2015 we flew to Chicago to have Brooklyn evaluated for transplant. During that visit a transplant social worker talked to us about the Children’s Organ Transplant Association (COTA) and gave us some information. The whole, multiple-day evaluation visit was a blur, and I did not have the energy for a very long time to pick up any of the folders or brochures we had been given during our visit. Brooklyn was listed on the UNOS list for a liver transplant and we returned to our Memphis home to wait for the call.
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. 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.
In July the Faris family returned to Chicago for further medical testing. Specifically Brooklyn’s doctors wanted to run genetic testing on the little girl. Much to Nick and Jesse’s surprise, Brooklyn tested positive which meant she did not have biliary atresia but instead was diagnosed with Alagille Syndrome, a rare genetic disorder that can affect the liver, heart and other parts of the body. One of the major features of Alagille Syndrome is liver damage that can require a liver transplant, which continued to be what Brooklyn needed.
In early August, I finally picked up the COTA brochure and summoned the courage and energy to call the 800 number. I am not quite sure what was holding me back other than being completely stressed out and not really believing COTA could be as great as they seemed. After speaking with Sherry at COTA about the support and guidance they offered, I hung up the phone and cried. I could not believe this organization would take this much off of our plate! I instantly felt gratitude and a sense of peace. The next task was to ask one of my friends to lead the COTA community campaign. I took a long time mulling over who I could ask to do this — it is very difficult for me to ask for help and we had already received so much assistance when we were going through the Chinese adoption process with Brooklyn. I asked a good friend and neighbor of ours who has a lot of mutual friends in common with us as well as being a strong influence in our community. She jumped at the opportunity. The fact that I, as a COTA parent, could not lead the fundraising was such a blessing. I had so much going on and I was really stressed to my limit. To have a team of our friends and family members (i.e. COTA Miracle Makers) surrounding and supporting us without having us lift a finger was so humbling and amazing.
On February 24, 2016, we got the call that a liver was available in Chicago — just one week after the COTA in honor of Brooklyn F team hosted a hugely successful ‘yard sale’ fundraiser inside a large building in Memphis. In a very dramatic turn of events, we ended up being flown by one of FedEx’s corporate jets through a snowstorm to Chicago. Brooklyn received her life-saving liver transplant the next day on February 25th; her recovery was intense but rapid. She was discharged from Lurie’s Children’s Hospital just 11 days later, but we remained in Chicago for the rest of the month for observation.
The amount of stress and attention needed to get us to Chicago and to care for Brooklyn was never once distracted by the cost of travel or expensive medications or how much paid vacation my husband had left at work or how we would pay bills at home — thanks to the support and encouragement from COTA. They walked alongside us as our cheerleaders and made each step of recovery as smooth as possible for us as caregivers to our daughter, allowing us to give 100% of our attention to our family. It was such a blessing to have COTA helping with every financial detail behind the scenes. This truly allowed us to focus on Brooklyn and her recovery instead of the undercurrent of stress in each of those financial details.
Upon returning home to Memphis in March 2016 Brooklyn began to grow and thrive at a wonderfully rapid pace. We have had numerous follow-up medical trips to Chicago and a few inpatient stays since Brooklyn’s transplant as well as multiple medication changes. Never ever once have we worried about what our insurance would and would not cover because we know COTA is walking hand in hand with us every step of the way. Without COTA, Brooklyn’s liver transplant and the many transplant-related expenses would have been a mound of accrued debt that would have taken us a decade to climb out of. Thanks to COTA, we are stable and making it as a family.
We cannot even begin to express the gratitude we have for COTA and their employees. They have been such an important part of our family’s journey, and we could not have come this far without them!
According to Jesse and Nick, “When we stepped out in faith to adopt a baby girl from China who was in need of a liver transplant, we knew the costs would be huge — financially and emotionally. Learning the Children’s Organ Transplant Association (COTA) existed to support transplant families like ours was a huge blessing. Every single detail of their organization has been set up to alleviate stress from families dealing with incredibly stressful circumstances. We have felt so encouraged and supported by their staff; our daughter is thriving today because of the way COTA has blessed our family.”
Today Brooklyn loves donuts, ice cream and her big sister, Rhet. According to Jesse, “Brooklyn is doing great! She is in Junior Kindergarten this year and is loving it. She is a happy and healthy little girl who loves making new friends, playing pretend, eating any sweet treat and making crafts. We are so thankful for her health!”
This Christmas will likely be full of celebration and joy for Jesse, Nick, Rhet and Brooklyn as they enjoy the holidays in their Memphis home. Brooklyn is a gift for this family who went from praying they could get her home from a Chinese orphanage in time to receive a new liver to now watching their beautiful daughter enjoy the sights, sounds and tastes of the holiday season. They will indeed remember their special donor angel this holiday season as well.
Merry Christmas Faris Family from your COTA Family!