Fundraiser will aid student with heart, lung transplants

Shea McNeely received the best gift for her 17th birthday – a new first breath.

During her sophomore year at Buhach Colony High, McNeely was diagnosed with pulmonary arterial hypertension, a rare disorder in which arteries in the lungs become narrow or blocked.

The constriction causes the heart to work harder to pump blood through those arteries. This causes strain on the heart and the condition may become life-threatening.

McNeely always found physical activity challenging but didn’t know why. She said she joined her high school’s marching band as a way to avoid physical education class. But during marching season, McNeely would get short of breath, become pale and feel sick. Tested for drug use and pregnancy, she was misdiagnosed several times.

After watching her collapse in November 2013, her mother Rhonda McNeely, a nurse, suspected a heart issue.

An electrocardiogram found that McNeely’s heart activity was indeed abnormal, and she was referred to Valley Children’s Hospital in Madera. From there, McNeely, was flown directly to the intensive-care unit at Lucile Packard Children’s Hospital Stanford, where she was diagnosed with the rare condition.

A central line was inserted through a port directly into McNeely’s heart and attached to a pump that would give her medication, which was supposed to open up her lungs and decrease pressure on her heart. It didn’t work, and her condition only worsened.

In August 2014, McNeely was put on the organ transplant list with urgent status for two lungs and a heart. On Dec. 18, she received her heart-lung transplant, and three days later, on her 17th birthday, she took her first unassisted breath with her new lungs.

After spending most of the past year at the hospital in Stanford, McNeely is back in her Atwater home.

She is not allowed to go out to public places because of her frail immune system. Church and theaters are not options at this moment, and neither is public school. But McNeely has continued her education through online classes and is on track to finish high school on time.

However, making the transition back home has not been easy for McNeely or her mother. She is on about 25 medications, which have to be sorted out in a pill organizer every week. Her mother is on the phone constantly with pharmacies and medical insurance agents.

“I’m doing a lot better,” McNeely said. “But it’s not as easy as it looks.”

During their stay at Stanford, Rhonda McNeely, a single mother of two, also had to make the tough decision to send her 11-year-old son to live with his grandfather in Oregon, so that he could continue school. She hasn’t been able to go back to work, and medical bills keep piling up.

“Every time I think I’m going back to work, she ends up in the hospital,” Rhonda McNeely said. “This whole process has been the most stressful thing we’ve ever dealt with.”

According to the Children’s Organ Transplant Association, organ transplants can easily exceed $500,000 and the post-transplant costs can run up to $120,000 a year.

During their stay at the hospital, Rhonda McNeely learned about Children’s Organ Transplant Association, a nonprofit that helps children and their families with fundraising assistance.

On May 9, the association will host a dinner and auction for Shea McNeely. The event will kick off at 5:30 p.m at the Merced County Fairgrounds Pavilion, 900 Martin Luther King Jr. Way.

All funds collected will go toward McNeely’s medical bills.

Teresa Jacobsen, a family friend and McNeely’s third-grade teacher, has taken on the role of event coordinator for the dinner and auction. Jacobsen said the family has already received support from schools, doctors and other members of the community.

Although her exposure to public places is restricted, McNeely said she wants to make an appearance at the dinner auction. “When you’re used to bad things happening to you, it’s nice to see there is still some good in the world,” she said.

Individual tickets for the event are $40, and table for eight is $300. Donations can also be made online at www.COTAforSheaM.com.

For more information on the fundraiser, contact Jacobsen at (209) 658-9008.

This story was originally published April 20, 2015 at 9:57 PM with the headline "Fundraiser will aid student with heart, lung transplants."