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Arlington girl in need of heart transplant

Lacey Ernst’s bedroom was redecorated with a Disney theme earlier this year by the Make-A-Wish Foundation. - Kirk Boxleitner
Lacey Ernst’s bedroom was redecorated with a Disney theme earlier this year by the Make-A-Wish Foundation.
— image credit: Kirk Boxleitner

ARLINGTON — When she meets new people, 4-year-old Lacey Ernst immediately smiles, greets them cheerfully and asks them all sorts of curious questions, but one question that she has to ask — “Are you sick?” — has less to do with friendly concern and more to do with a pressing, life-changing need.

Lacey has been on the heart transplant list since Nov. 21 of last year, just weeks after her fourth birthday on Nov. 6, but if she catches even a minor cold, it runs the risk of disqualifying her from receiving a transplant, even if a donor match is found for her.

“We use a lot of Germ-X in this house,” said Nick Ernst, Lacey’s father.

Lacey’s beautifully redecorated and Disney-themed bedroom, a gift from the Make-A-Wish Foundation, was meant to provide some comfort for a little girl whose multiple heart surgeries to date have not only weakened her body to the point that she needs twice-weekly physical therapy sessions to help her build up the strength to climb even a small set of stairs, but have also rendered her currently incapable of eating food on her own.

“She has to feed through a tube now,” said Nick Ernst, who noted that Lacey had her first surgery at eight days old and her second at six months of age, before undergoing a series of four surgeries between September and December of last year. “She lost the ability to chew or swallow over the course of all the surgeries she’s had. It got to where the effort from that was burning off more calories than she was taking in from the food. Her second surgery also gave her an oral aversion. If she gets even a crumb in her mouth now, she freaks out. She’s spent so long in a hospital bed that she can’t run, skip or jump.”

Nick and his wife Heidi met at the Jack in the Box restaurant in Smokey Point where he still works, and the couple’s feelings about their predicament are as conflicted as the contrast between Lacey’s sunny mood and her serious situation.

“She’s just the happiest little kid, and we’re thankful for all the things we have,” said Nick Ernst, who told those who are moved by Lacey’s plight that their prayers are even more appreciated than their donations. “At the same time, this is extremely hard to go through. She looks like a normal, healthy little girl, but she can’t go to school with other kids. Even if she didn’t catch a cold from them, she’d be like a turtle in the middle of a bunch of rabbits. She has no sense of balance, and if she gets knocked over, that’s bad news, because the anti-coagulant medicine she’s taking can make even minor bumps or bruises much worse.”

While the Ernsts’ medical insurance will cover the bulk of the eventual surgery costs for Lacey, Nick still expects to incur about $50,000 in out-of-pocket expenses, and with the constant care and supervision that Lacey requires, including multiple doses of medication that need to be administered throughout the day, Nick admitted that he and Heidi have had next to no time to themselves, which is why they’ve been grateful to everyone who has assisted them, from Lacey’s grandmother to the members of their church.

If you would like to donate to Lacey Ernst, you can log onto http://cota.donorpages.com/PatientOnlineDonation/COTAforLaceyE.

 

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