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January 2, 2018 – For years to come, January will be a month full of celebration and joy for the Gray family of Atlanta, Georgia. But when their son, Everett, was born six years ago they were not certain his January birthday celebrations would be a reality for their family.
Everett’s transplant journey started while he was in utero. Kelley and Jeremy Gray were beyond excited when they learned the news of their pregnancy. However, at their 20-week prenatal anatomy scan, the baby was diagnosed with a severe congenital heart defect known as Hypoplastic Left Heart Syndrome. This meant the baby would be born with a small, underdeveloped left ventricle and would not survive without surgery.
Jeremy and Kelley welcomed Baby Everett to the world a little earlier than they expected when he arrived five weeks premature. He was transferred to Children’s Healthcare of Atlanta at Egleston the night he was born, and his first open heart surgery was performed when he was just two days old. The surgery was successful, but the recovery was long and difficult for the tiny infant. Everett’s second open heart surgery, the Glenn procedure, was performed when he was almost five months old. After that surgery the baby started growing and developing well, but Jeremy and Kelley both knew a heart transplant was necessary for him to have a second chance at life.
The young family’s next health challenge occurred in March 2013 when a clot in Everett’s native aorta caused severe heart failure. The toddler was hospitalized for three weeks recovering from this major setback. Then in the middle of the night on March 31, 2015, Everett woke up struggling to breathe. The Grays noticed his color was pale and he was restless. They rushed to Egleston’s ER and after extensive lab work, ultrasounds and an emergency cardiac catheterization Jeremy and Kelley were told Everett was, once again, in severe heart failure. On April 3rd as it became clear that Everett’s heart would not recover and his condition would continue to decline, he was listed for a heart transplant at the highest priority status: 1A.
According to the Grays, before Everett was born they knew a heart transplant would be in his future. But the hope and expectation was they would not be facing a transplant for 10 to 15 years. That was not to be the case, and Braveheart Everett (as his Facebook effort was aptly named) was admitted to the CICU until a matching heart could be found.
During this time of inpatient waiting, a transplant social worker gave Jeremy and Kelley information about the Children’s Organ Transplant Association (COTA). Jeremy and Kelley admit they did not give the information much attention at first. They decided to take a second look once they started to encounter other transplant families who were working with COTA and started to get a better picture of the transplant-related expenses they would be facing for Everett’s lifetime.
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 May 14, 2015, a COTA fundraising specialist traveled to the Atlanta area to meet with volunteers for the COTA campaign in honor of Everett G and walked the group of attendees through the entire process. Within days of their training, this COTA team of volunteers was off and running.
“From the first moment we started working with COTA, we felt a sense of relief and gratitude,” said Jeremy and Kelley. “Unlike GoFundMe and other crowdfunding sites, 100% of the funds raised for COTA by community volunteers are used for transplant-related expenses – there are no administrative or other fees.” 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 patient’s lifetime.
“The Children’s Organ Transplant Association provided a community of understanding, encouraging, supportive people to show us we were not alone in this transplant journey. Once we decided to fundraise with COTA for transplant-related expenses, we could solely focus on taking care of our fragile child while he waited for his life-saving heart,” they said.
The COTA in honor of Everett G team of volunteers quickly got to work while the Grays waited for the call that a new heart had been found, and over the course of several months, these COTA volunteers raised nearly $70,000 for transplant-related expenses.
At 4:00 a.m. on June 4th, after 65 days in the cardiac unit, the Grays were told there was a heart for Everett. Fourteen minutes after receiving the call, Jeremy posted, “They have identified a heart for Everett! We will post more details as we have them. Everett seemed excited about getting his new heart and said he wants to go home afterwards and then to the zoo to ride the train.” At 11:30 p.m. Jeremy posted, “Everett is out of surgery and headed back to CICU! We still have some difficult hours and days ahead, but we have cleared the biggest hurdle. We are so grateful to the donor’s family for their life-saving gift to Everett and we are so thankful to everyone following Everett’s journey for your incredible support and encouragement. We have definitely felt your presence with us today.”
Everett’s inpatient recovery was smooth. On June 9th (five days post transplant) Everett was discharged to home. According to his parents, he sat on the living room sofa for a bit and then quickly picked up playing trains right where he left off on March 30th when he was rushed to the ER. Everett had his favorite pizza for supper that night, played guitar and sang a song, put on pajamas and headed off to his own bed.
The Grays continued to post about Everett’s remarkable post-transplant recovery throughout the summer months, including a much-celebrated announcement that Everett was returning to preschool on August 17th. The COTA in honor of Everett G team of volunteers continued their fundraising efforts that summer as well. Kelley admits she and Jeremy were periodically asked about why they were fundraising since the family has health insurance. Her response included these facts:
- The average cost of a heart transplant in the United States is more than $900,000.
- The immunosuppressant drugs required after transplant cost thousands of dollars per month. The effectiveness of these medications is determined through blood tests. Everett will have blood drawn every eight weeks as long as levels are stable, and more frequently after dosage adjustments. Some post-transplant medications are particularly hard on the gall bladder and kidneys so gallstones and kidney failure are not uncommon in the years following transplant.
- Health insurance coverage covers much of these amounts, but even beyond deductibles, copays and coinsurance, there are obscure benefit limits and plan exclusions buried in the fine print.
- To check for rejection, Everett will have regular heart biopsies, which are performed under general anesthesia in the cardiac cath lab. In addition to multiple biopsies he will have annual cardiac angiograms and echocardiograms.
- Without incredible medical advances, Everett will eventually require another transplant. The average lifespan of a heart transplanted at Everett’s age is 14 years.
According to Kelley, “After Everett’s transplant, we found there were significant gaps in what insurance would cover and what Everett actually needed as far as medications, rehab therapy and other transplant-related expenses. The COTA funds are intended for a lifetime of care. COTA gives us peace of mind knowing that Everett will have access to whatever medical and follow-up care he needs to be the best he can be … even if it is care we would not be able to afford on our own.”
After Everett’s one-year post-transplant series of medical tests, the Grays posted, “No Rejection!! We are beyond relieved and grateful to share that Everett’s biopsy and cath results are perfect and he does not have to have blood drawn again for two months. Thank you for your continued love, support, prayers and good thoughts.”
Today as the Gray family (Jeremy, Kelley, Everett and Little Sister Eila) prepares for Everett’s 6th birthday celebration, Everett is doing well. The Grays are grateful for all the life he now has the opportunity to live … including birthdays. Everett’s name means, ‘strong and brave, like a wild boar’ and to date, his parents report they have not met anyone of any age who is stronger or braver. Everett had a heart cath and biopsy on December 7, 2017, and the Grays are relieved and happy to report that his heart function is great. There were no signs of rejection! He is living a full, active life as a kindergartener and loves his trains, soccer, time with friends and trips to the zoo.
Truly unbelievable? This little boy is already thinking about his future. When he grows up Everett wants to be a train engineer and a kindergarten teacher. Everett is currently masterminding a plan where he can teach school in the mornings and then go to his second job in the train yard. He certainly is a boy who is always thinking thanks to his new heart that is always ticking.
Happy Birthday, Braveheart Everett Gray, from your COTA Family!