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Personal investments from Primary hospital workers help families cope

Telethon helps cover 15,000 charity care visits for children

Published: Sunday, May 27 2012 11:16 p.m. MDT

Four-year-old Matthew Sperry clowns around while he and his mother, Chrissy Sperry, await a second heart transplant at Primary Children's Medical Center in Salt Lake City.

Jeffrey D. Allred, Jeffrey D. Allred, Deseret News

SALT LAKE CITY — A flying monkey was hurtling above 4-year-old Matthew Sperry's hospital bed Friday, making a beeline for his doctor at Primary Children's Medical Center.

Surrounded by family and health care providers, the brown-eyed boy giggles as his mother Chrissy Sperry prepares to launch the stuffed animal at yet another unsuspecting victim.

It's a light moment in a difficult trial in the Sperry family's life. Matthew's heart is failing and he is awaiting a second heart transplant. He was placed on a transplant list at the end of January. Doctors are laboring to keep his failing heart working as well as it can until a matching donor heart becomes available.

As his latest hospital stay entered its sixth week, transplant coordinator Emily Bullock gave Matthew the flying monkey to break up the monotony and to bring a little levity to a situation his maternal grandmother Rebecca Curtis describes as an "emotional roller coaster." The boy's heart condition, coronary artery disease, was discovered during a routine ultrasound procedure when Matthew was in his mother's womb. When he was 2, he underwent his initial heart transplant.

The gift of a flying monkey — and the thought behind it — are emblematic of the personal investment that the staff of Primary Children's Medical Center makes in its patients, Curtis said. Whether it is a medical specialist or the person who cleans the boy's room, the staff at the children's hospital have become extended family, Curtis said.

"They become people who care about your special person. You feel that," she said.

As the 29th annual Primary Children's Miracle Network Telethon approaches, Sperry said she is reminded of the many blessings in her life. Although her son is very ill, he is generally good-natured as he endures shots, more than a dozen different medicines and the insertion and care for his feeding and medication lines.

"You'd never know he's as sick as he is," she said.

Sperry she is also grateful that her family has health insurance so they are not further burdened by worrying about paying for their son's care as he awaits a second transplant.

"I don't know how people do it because this is traumatic enough."

The telethon, which will be aired on KSL from 2 p.m. to 10 p.m. Saturday, raised more than $2.6 million in 2011 to help pay for charity care, research, bereavement therapy, music, toys and art supplies.

Throughout the year, Primary Children's Medical Center expends more than $14.3 million to cover some 15,000 charity care visits for children from the Intermountain area to New Jersey.

"I don't know how we could continue to do that, year after year," without the support of the community, said Sharon Goodrich, the hospital's foundation director over annual and corporate giving.

"I don't know how we could provide the programs we do that enhance the healing of children."

Sperry, who has been at her son's bedside 24/7 five days a week (she and her husband Matt switch off on weekends), said the hospital's caring touch has extended to her entire family.

Child life specialists have worked with the couple's older sons Joshua and Luke to help them process the emotions of their little brother's life-threatening condition and the extended absences of their mother as she has tended to her youngest child at the hospital.

"They have been unbelievably patient and selfless in understanding Matthew's needs," Sperry said of her older sons.

Chrissy Sperry said the hospital has also provided support to her and her husband by arranging conferences with Matthew's medical team and helping tend to their spiritual and physical needs.

The family has also been sustained by their faith and the prayers of others, she said. Sometimes, though, it is difficult to know what to pray for with respect to her son.

The family wants Matthew to receive a donor heart to sustain his life. Finding a suitable match is complicated because both the donor's blood type and antibodies must match Matthew's.

Chrissy Sperry said she is cognizant that if a match donor heart becomes available it means another family will have suffered the loss of their child. The family prays that if a family is faced with the question whether they will donate their child's organs, "I pray they'll be able to say 'yes,'" Sperry said.

Spending as much time at the hospital as she has, Sperry is keenly aware of the challenges other families at the hospital are facing.

"I want to donate (to the telethon) so people who are here don't have to worry."

Telethon

Primary Children's Medical Center will observe its 90th birthday on Saturday, June 2. The telethon will round the day, with KSL personalities hosting a three-hour televised event from 7 p.m. to 10 p.m.

Donations are being accepted all week at ksl.com.

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