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Fight Like Emily: Lung Transplant Journey Continues

Emily King in Boston Children’s Hospital

Emily King in Boston Children’s Hospital

Photo Credit Justin King

By Kristi King

The family of Emily King, a 7-year-old Sanford resident whose life was saved by a double lung transplant at age 2, is asking for more help for their daughter.

Stephanie King said her daughter was being put back on the list for a lung transplant because of chronic rejection of the lungs she received in 2019. Right now, Emily has to go to Boston Children’s Hospital twice a week for photopheresis, a blood filtering treatment aimed at fighting rejection.

The numbers are difficult to comprehend: Only 25 pediatric lung transplants were performed nationwide in 2022, Stephanie said, and lung transplants have the highest rate of rejection of all transplanted organs. But the fact that the doctors put Emily on the list again is a hopeful sign.

Emily beat the odds before. She was born prematurely, and due to a placental abruption, her lungs started out very weak. When she was 2 years old, a lung infection similar to RSV destroyed her already-fragile lungs. Her family was “preparing for the worst; hoping for the best,” Stephanie said. Through New England Donor Services, Emily was put on a lung organ donor list. Miraculously, she received a double lung organ donation in 36 hours from another 2-year-old girl named Hannah. This April 13, 2019, surgery enabled Emily to live an active lifestyle, including attending Carl J. Lamb School and participating in a soccer team and a dance troupe through Dance Studio of Maine South.

However, during a recent routine visit, doctors noticed a drastic reduction in Emily’s pulmonary function test, with her number dropping from 62 to 34 percent in a short time span, indicating she is facing irreversible lung rejection.

Since then, Emily has had surgery during a week-long stay to put in a port for her photopheresis. This procedure separates your lymphocytes from the rest of your blood, treats the lymphocytes and then returns the treated blood cells to your body.

Emily King At Home

Emily King At Home

Photo Credit: Stephanie King

“This round is really heartbreaking for us as her family,” Stephanie said. “She went from a typical activity level that included dancing and soccer to now she has a handicap walker and can’t walk without gagging and coughing.” This has been difficult for her family, which includes her dad Justin and two older brothers, Parker and Chase.

Through it all, Stephanie says about Emily, “She’s amazing. She’s a fighter. She’s sassy and never gives up.”

The community hasn’t given up on Emily either, something the family is thankful for. “There are so many people who have supported Emily – at her school, neighbors, strangers, our families,” Stephanie said. Her teachers, Ms. Adams and Mrs. Adams, along with educational technicians, Mrs. G and Mrs. DC, have been instrumental in providing Emily’s ongoing at-home schooling using Grahamtastic Connection. She has 1,800 followers for her Facebook page, here.

“It is so helpful to share our girl’s story,” Stephanie explained. “It can be very isolating, but with an army of 1,800 followers behind us it builds us up. We also love educating others on organ donation and sharing her donor’s story with as many people as possible.”

Because Emily is homebound, Stephanie is asking people to brighten her days by posting to her Facebook page. “Emily loves silly jokes, animal videos, and cooking recipes,” she said. “She even has a ‘Cooking with Emily’ show on TikTok.”

“The light and love we’re getting from the community has been a nice distraction,” acknowledged Stephanie. This is evident in recent posts showing supporters wearing Emily’s favorite colors, pink and blue, on her Facebook page.

In addition, Emily’s aunt Amy started a GoFundMe page to help the family afford the twice-weekly trips to Boston and other expenses. It had raised more than $5,000 by earlier this week.

“Everyone has been so amazing. It’s incredible how kind and generous people have been through her journey with their time, thoughts and wishes,” said Stephanie. “We are super grateful for everything everyone does.”

The family is also thankful for New England Organ Services and especially to the organ donor’s parents, who “made a difficult decision and gave Emily this special gift of life,” stated Stephanie. Education and awareness of organ donation are especially important to Emily’s family. They want to spread the word that organ donors give the gift of life, and they encourage everyone to consider becoming a registered organ donor.

“Our main goal is organ donation education and awareness,” said Stephanie. “We want people to know how very important this act of kindness is. It truly is the gift of life.”

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