Holtz Children’s Hospital volunteer bring cheer to the sickest patients

 

Known as Grandpa at Holtz Children’s Hospital, Juan Manfredi uses his experience with a terminally ill granddaughter to bring joy and hugs to the sickest pediatric patients.

aveciana@MiamiHerald.com

Juan Manfredi is 72, retired, a grandfather with hair as white as a sheet of unblemished paper. But in the corridors of Holtz Children’s Hospital at the University of Miami/Jackson Memorial Medical Center, he is a rock star, a celebrity.

“Hey, Grandpa.” one nurse calls out.

“Grandpa!”

“You here today, Grandpa?”

For the past decade, Manfredi has been a volunteer at the hospital, primarily in the pediatric intensive care, oncology and transplant/surgical units. During that time, he has become a recognizable figure in his blue polo shirt with “Grandpa” stitched on the front and a Spider-Man backpack flung over a shoulder.

Three days a week, he drives from his home in Hollywood to brighten the long days of Holtz’s seriously ill children, his iPhone and iPad at the ready.

“There are plenty of toys for them to play with,” he says, with a wry chuckle, “but what they usually ask me for is one of those.” He points to his stash of electronics. “They love the games.”

On this particular Friday, there is no hint of the spring heat in the climate-controlled playroom, but the warmth that surrounds Manfredi and his 3-year-old friend, Armonnie Smith, is palpable. Armonnie is a multi-organ transplant patient who has been in and out of the hospital his entire life. He and Manfredi have developed a strong attachment to each other.

Hair pulled tight on the top of his head, a battery of beeping medical machines in his wake, Armonnie tries to monopolize Manfredi’s attention, saying “he’s funny and he plays with me.”

One of their favorite pastimes is painting. Manfredi dips a long-handled brush into a paint jar and Armonnie mashes the brush on a large sheet of paper, for an effect that is not unlike a Kandinsky abstract.

When two white-robed women appear in the playroom, ready to whisk Armonnie away for a procedure, the boy pleads: “Can you come with me?”

The women shake their head in warning, and Manfredi replies softly. “I can’t. I’m sorry.”

Armonnie shuffles off, chin quivering, eyes darting back to Manfredi again and again.

It’s not easy volunteering with children who are so sick, children in pain, children alone, children who might not make it to the end of the year. “Sometimes it’s too much,” Manfredi admits. “It gets to me. I have to take time off.”

How much time? A week? A month? “Oh, no, no,” he laughs. “No more than a day, and sometimes not even that. I put the jazz very loud in my car, and that helps.”

Manfredi, who still does occasional consulting work in medical-equipment sales for clients in Brazil and Mexico, his old profession, knows the special hurt of caring for a very sick child. His granddaughter Amanda spent more than nine months in the pediatric intensive care unit after a multi-organ transplant. She was 10 years old when she died in October 2003, leaving a devastated family — and a grandpa who had found a new calling.

During Amanda’s stay at Holtz, Manfredi visited her every day. He noticed that not every child had visitors. Amanda noticed it, too. Some parents were working; others had abandoned their children to the state, overwhelmed by their care.

“She would tell me, ‘Go, go, play with the other children.’ I remembered that. When she passed, I continued to do that.”

Manfredi said he was inspired by the pediatric intensive care unit’s nurses, the child-life specialists and the social workers. He specifically cited Holtz nurse Kim Juanico, who founded People in Crisis United, a nonprofit group that sponsors monthly family dinners and art therapy sessions for pediatric patients as well as field trips for the kids healthy enough to venture outside the hospital.

“There is so much love here, so much giving,” he says. “They inspire me to volunteer.”

Juanico refers to Manfredi as Grandpa, joking that he specializes in bear hugs. “He’s family to us — not just to the kids but to the staff, too. He’s been here so long.”

Manfredi started his own nonprofit group, Amanda’s Friends, in honor of his granddaughter. Funded by donations mostly from Manfredi’s family and friends, the group helps caregivers with their needs, everything from clothing to money for rent or funeral expenses. He also works closely with People in Crisis United.

“I see the mothers .” he begins, and pauses to steady his voice. “It’s hard on the families, but it is so hard on the mothers.”

He recalls how much his own mother suffered after another one of her sons died of brain cancer in Buenos Aires, where Manfredi grew up before he came to the United States at age 19. “When my mother died at 84,” he recalls, “the last word she said was my brother’s name.”

Among the children he has helped care for at Holtz were two transplant patients whom his daughter, Monica, eventually adopted, Riana in November 2005 and, six months later, Logan. Both died, and many might say this was another loss, another heartbreak for Manfredi.

He sees it differently. “My daughter loved those kids like her own,” he explains, “and those children had at least that for those years.”

Manfredi does more than play, color and read books with the young patients. He also serves as sounding board for family members who, as he explains, “need somebody to talk to. Sometimes they just want a break so they can go take a shower.”

For Luis and Maria, parents of Mariana Cuestas Oyuela, Manfredi provides emotional support for a young couple far from home. In the Cuestas’ case, home is Honduras. Mariana, who will turn 1 on May 21, has been in the hospital since October, suffering from pulmonary hypoplasia, or undeveloped lungs.

“He gives us advice from the years of experience he has,” Luis says. “He prays with us. He is as much support for her” — he gestures to his baby in the metal crib — “as he is for us.”

Manfredi, a volunteer member of the hospital’s pediatric palliative care team and the Family Advisory Council, teamed up with People in Crisis United and Holtz’s Certified Child Life specialists, healthcare professionals who help sick children and families cope with illness, to open a “simulation room” that serves as a place to teach caregivers essential skills, such as how to replace a feeding tube. The project’s main donor was the Mexico-based MDI Care Group, a client of Manfredi’s when he sold medical equipment in Latin America.

All the volunteering keeps Manfredi busy at a time when his peers are traveling or hitting the links. He credits his wife of 53 years, Elsa, and daughters Monica and Sandra for their unflagging support. He vows to continue until his legs or his energy give out. His heart certainly won’t.

“I see kids suffering, and sometimes there’s no one here to hold their hands,” Manfredi says, his voice breaking. “I think of Amanda and what she would tell me and what she wanted me to do. I think of her and I try my best.”

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