In a Pittsburgh hospital room, 8-year-old Kyree Beachem is up and walking. It’s just a few weeks after a lifesaving multi-organ transplant, an event rare enough even in this age of medical advances to make international news.
It is something for which Kyree and her family had waited for five years.
Nearly 250 miles away, Luis and Evelyn Morales sit in the living room of their Lancaster city home. They watch son Gabriel, 1, take some of his first steps, corralling him before he heads off unsupervised into the kitchen. Daughter Maria, almost 3, gets up from the Mickey Mouse puzzle she’s assembling on the floor and walks over to the brilliantly lit Christmas tree in the corner.
“That’s my sister,” she says, pointing to a homemade angel ornament. The angel’s face is a photo of a grinning, dimpled, brown-haired girl with dancing eyes.
It’s Arianna, the Morales’ first child. A lover of baseball and the movie “Frozen,” bedtime songs and her siblings, Arianna was born with lobar holoprosencephaly, a brain disorder.
“When I was pregnant with her, we didn’t have a good prognosis, ” Evelyn says. “We didn’t have anything ready (when she was born) because she wasn’t expected to make it.”
But Arianna survived. Born at Women & Babies Hospital, she was transferred to Penn State Hershey Children’s Hospital, where she received a shunt, and finally came home 23 days after birth.
She learned to eat by mouth, which meant her feeding tube could be removed. Evelyn and Luis took her to physical and occupational therapy at Schreiber Pediatric Rehab Center. They took her to vision and speech therapy. A student at S. June Smith Center, Arianna eventually could bear some of her weight on her feet. She could use an iPad to communicate.
And less than a week before Thanksgiving, all that changed.
‘They never had an answer’
Arianna, who had just turned 5, woke up lethargic on Nov. 20. A visit to the pediatrician turned into an ambulance ride to Penn State Hershey. Then, Arianna’s breathing became labored. Then, tests showed a lack of oxygen to the brain.
“They still tried to treat her in every way, and tried to figure out what got her sick to begin with,” Evelyn remembers. “But they never had an answer.”
By that Monday, two brain scans showed no activity. And the Moraleses were left with an unimaginable choice: making the call to turn off their daughter’s life support.
They knew that, this time, there really was no hope for Arianna. But when the subject of organ donation was raised, it gave them a small glimmer of peace.
“We understand organ donations a little bit differently,” Evelyn says, because Luis himself may need one someday. He has congestive heart failure, and was preparing in 2013 to be put on the list for a heart transplant before his condition stabilized.
“No parent wants to make the choice of what time to turn off life support,” Evelyn says. When Gift of Life Donor Program, a nonprofit that coordinates organ and tissue donation in this region, stepped in, that burden was lifted from Arianna’s parents.
Arianna’s organs were entered in the Gift of Life database, looking for a match. Ultimately, matches for all of her eligible organs except her lungs would be found, divided between four recipients.
‘I am in tears as I write this’
It was Nov. 24, and Kyree Beachem, of Ellwood City, was already a patient at Children’s Hospital of Pittsburgh of UPMC. She’d been on IV fluids 22 hours a day for all her nutrition, and it was beginning to take a toll on her liver.
Kyree was born with a colon that was missing nerve cells, a condition known as Hirschprung’s disease. She’d had a portion of her small bowel replaced in 2010, only to have that transplant rejected by her body 10 days later.
She was at the top of the list for another transplant attempt, and at lunchtime that day, a call came that organs might be available. The match was confirmed by testing, and at 2 a.m. on the day before Thanksgiving, Kyree was wheeled into the operating room to receive a new liver, small bowel and pancreas.
“I am in tears as I write this,” her mother, Nan Beachem, posted on a Facebook page, Kyree’s Dream Team, that had been set up to support the little girl. “There is a family that has suffered the greatest loss a parent can experience, and in the midst of that loss is giving my daughter a chance to live and fulfill her dreams.”
All Kyree’s mother knew was the name of the hospital where the donor had been.
Triple organ transplants are still rare — rare enough that Nan Beachem was contacted by CNN for a story before Kyree was even out of surgery.
The resulting CNN.com story about Kyree’s surgery was spotted by one of Evelyn Morales’ relatives.
And the relative started to investigate whether the Morales family’s decision to donate Arianna’s organs could be linked to Kyree’s miracle on the other side of the state.
The timing was right. The girls’ ages were compatible. There were details on the Kyree’s Dream Team Facebook page, that just … matched. Perfectly.
And so it developed that, by the Monday after Thanksgiving, less than a week after organ-transplant surgery, Nan Beachem and Luis and Evelyn Morales had found each other.
‘I just melt into tears’
The families of organ donors and recipients usually aren’t known to each other unless special effort is made, according to the Gift of Life website. Strict patient privacy is observed, and a family support services department reviews all correspondence between donor families and recipients.
But social media allowed Nan Beachem and the Moraleses to bypass that — though, Evelyn says, she and Luis still will write letters via Gift of Life to the three other recipients who received Arianna’s heart and kidneys.
And social media allowed the Moraleses to set up a visit with Kyree.
On Dec. 16, Luis and Evelyn stepped into a room on the transplant floor of Children’s Hospital of Pittsburgh. In the bed was a small, blond girl in a panda bear-patterned hospital gown, her hair pulled to the side in a red and green bow.
“They were bearing bags and bags of gifts, ornaments from family and friends; it was amazing,” Nan Beachem said in a phone call last week.
“We just wanted them to know we’re here to support them now, too,” Evelyn said.
And the families exchanged Christmas ornaments: Arianna’s cousins made two sets of angel ornaments bearing the girls’ faces — one for Kyree’s hospital room tree, another set for the Moraleses. Arianna’s preschool classmates sent ornaments, and a friend of the Morales family made a little, blond angel ornament bearing the words “Arianna” and “Kyree’s Angel.”
“The past few weeks have been a lot of everything,” Nan Beachem says, “Christmas, the transplant, how Kyree is feeling hour to hour.” There really have been only a few moments to sit and reflect, she says, “and when I do, I just melt into tears.”
Nan Beachem knows firsthand, she says, some of the Morales’ loss.
In 2006, her own 7-year-old daughter, Tessa, passed away from MPS, a genetic enzyme-related disease.
‘There’s hope in any of it’
The Moraleses are just at the beginning of their journey after Arianna’s death. After staying home to care for her oldest daughter, Evelyn starts work in January at a pediatric home health care company. After Christmas break, Luis, who is on disability because of his heart condition, heads back for his second semester at Harrisburg Area Community College. He’s pursuing a degree in social work — inspired, he says, by Arianna.
Throughout their daughter’s five years, Luis and Evelyn say, they’ve been surrounded by inspirational teachers and therapists. “Now that we’ve learned so much with Arianna,” Evelyn says, “it would be a shame not to use that. And there’s so much need for it.”
And, she says, “there’s hope in any of it, you know? Whether in utero, or several years, or a whole lifetime, they can make a huge difference in the world. And Arianna certainly did that.
“I mean, she brought a whole community together, she changed the direction of our lives, and now she’s saved more lives through organ donation.”