Stories from the transplant journey

Erin, a heart recipient, kisses her fiance

On April 11, transplant recipients and their families gathered at Boston Children’s Hospital to speak about their transplant journeys during a special nursing grand rounds. As Donate Life Month draws to a close, we share excerpts from their stories, made possible #becauseofadonor.

Erin – heart recipient

When Erin was just 6 months old, she was diagnosed with cardiomyopathy, which severely weakened her heart. At age 1, she was listed for a transplant — and received her new heart just nine days later.

“My heart was only expected to last about eight years. I am beyond thrilled to say that I am 22.5 years post-transplant. I have been able to keep up with all of my siblings, classmates and friends and live a completely full life. I played sports all through school, stood next to both of my sisters on their wedding days, helped my brother move into his first house, graduated from UNH with my bachelor’s degree (after taking a semester off to go through chemotherapy for cancer), accepted a full-time job doing early intervention, became a godmother to the best little boy, welcomed two nephews into the world, and met an amazing guy that I’m getting married to this summer! We love to camp, hike, kayak and go on adventures together. No words will ever begin to express how fortunate I am to be the recipient of this wonderful heart.”

Mae, a lung recipient, sitting in a chair

Mae – lung recipient

Mae was born with a rare genetic form of childhood interstitial lung disease. Although she was listed for a double-lung transplant shortly after her birth, her mothers, Courtney and Maura, hoped that she, like some children with this disease, would outgrow her symptoms. But after nearly a year without improvement, they decided to relist her. Just 30 days later, she received her new lungs.

“As we were anticipating the one-year “lungaversary” of Mae’s transplant, we were very aware of the pending milestone. To our surprise, our emotional energy that day was focused less on Mae’s miracle, and more on the donor family — what it must have been like for them in that moment, on the anniversary for them of what we assume was a tragic loss of their little miracle.

It is hard to comprehend that someone else’s loss and pain led to our freedom and joy. We remind ourselves that the donor did not die because of Mae, but since the donor’s life had come to an end, our gratitude is immense that the child’s legacy could live on in every breath Mae takes, and every heartbeat of another child somewhere out there and of the other organ recipient to whom this donor gave a new lease on life. Maura has said she always thought she would have three kids, and now she says she kind of feels like she does in our older daughter, Rosie, Mae and Mae’s donor.”

Boalvi, a kidney recipient, swimming with dolphins

Boalvi – kidney recipient

When Boalvi was a sophomore in high school, he began feeling sick and weak. He was eventually diagnosed with nephrotic syndrome caused by focal segmental glomerulosclerosis (FSGS), a pattern of kidney damage that occurs over time. In October 2016, he began dialysis three days a week while he waited for a transplant.

“The treatments were long and painful and I never adhered to the necessary liquid restriction. That’s when Dr. Nancy Rodig gave me a wakeup call and temporarily took me off the transplant waiting list. Months before, they had called me in for a transplant; however, there were complications and I wasn’t able to get the organ. I had been at the top of the transplant list and now I was taken off because of my lack of responsibility. The team suggested I entered a program called Med Coping. Dr. Shannon Hourigan was my therapist and she guided me throughout the rest of my dialysis and transplant. She made it much easier to understand why I was doing the things I was doing and what I could do to solve those problems. My outlook changed and I began to do right. They took me off of the waiting list in March and by late June, I was back on. On August 17, 2017, I received my new kidney. I’m grateful for everyone who made this possible for me, including the family of the donor.

Life after transplant has been amazing, I’m healthy, working and looking forward to going back to school in the near future. I learned to cherish my worst moments because they only make me stronger. As long as I’m breathing and living, I’m good.”

Riley, a liver recipient, sitting on bench

Riley – liver recipient

Riley was diagnosed with hepatoblastoma when she had just turned 7 months old, says her mother, Jill. Soon, her parents learned that she would need a new liver and she was listed for a transplant.

“Doctors determined that Riley’s father, Keith, was a match for living donor. This was such a relief, but I was also extremely scared to have both Keith and Riley go through this major surgery. We got the date of surgery and started to prepare. 

But surgery came sooner than we expected. We received news from Boston Children’s that there might be a potential deceased donor match for Riley. That was a long afternoon, thinking of the possibility of Keith not having surgery and Riley getting the transplant and feeling sad for the donor family. But on May 24, 2018, Riley received her new liver, when she was just 10 months old. It was still a few months until we knew what life would be like after transplant because Riley had to finish two more rounds of chemotherapy to be sure all the cancer was removed. It was a long year for our family, but we all made it through and are very grateful for that. Riley is now a very curious, wild toddler who loves her big sister, her bubbas (bottles) and stealing cookies from the cabinet!”

Jordi, a multivisceral recipient, looking at camera

Jordi – multivisceral recipient

When Jordi was about 13, he experienced pain that was ultimately diagnosed as liver cancer. After undergoing chemotherapy, he was listed for a multivisceral transplant, which he received relatively quickly.

“If it wasn’t for my donor, I wouldn’t have been able to graduate from middle school and high school, or to attend UMass-Lowell, pursuing a career as a doctor. I want to help other children out by becoming a pediatric oncologist. I know it’s a lot of work, but I’m determined. As a cancer survivor, I think I will be able to relate to these kids and inspire them.

I’m very grateful to be alive and to be 20 years old. I will keep pushing to live my life as much as possible — for me, and for the donor who is no longer here. Ever since this happened, I know I want to help out other kids, and I’m going to do that.”

Kymani, a lung recipient and organ donor, at graduation

Kymani – lung recipient and organ donor

At age 10, Kymani received a double-lung transplant after being diagnosed with primary pulmonary hypertension three years earlier. He enjoyed nearly a decade with his new lungs, says his mother, Carolyn.

“Prior to transplant, Kymani’s life was very limited. He was not able to attend school due to being on oxygen 24 hours a day, and spent all or most of his time at home. After receiving his donated lungs in 2010, he returned to school. He was so happy to be able to do all the things kids his age were able to do. The nine years post-transplant were his best years, and he lived each and every day to the fullest.

Life took on a whole new meaning for him as he was able to try different activities. In high school, Kymani went from being somewhat of an introvert to becoming a gregarious person, whose presence was felt the minute he entered a room. He loved to dance and spend time with friends. He got involved in chorus, he ran track and even trained me to run around the track. He attended his prom accompanied by all his friends and graduated with them. He was forever grateful to the nurses who cared for him during many of his hospital stays. He decided that he wanted to be a nurse so he could give back what he had so graciously received. Kymani was a full-time student at Quincy College, where he was pursuing a nursing degree.

Unfortunately, Kymani gained his angel wings in October 2018 prior to seeing that goal come to fruition. However, in his dying he continued to make me proud. He had become an organ donor himself. Kymani’s story is truly rare, as he was able to play both roles in his short life. Without organ donation, Kymani would not have lived nine additional years. Although Kymani never met his donor family, he was forever grateful — and I am sure that it’s from that place of gratitude he chose to become a donor himself.”

Learn more about our Pediatric Transplant Program or share your story made possible #becauseofadonor.