Lacey Ernst flashes a big smile as she shows off her newly redecorated bedroom, a fantasy-infused retreat that features Tinker Bell and her fairy friends on the walls, bed and child-sized furniture.
The room makeover was a gift from the Make a Wish Foundation, and Lacey was granted her “wish” because she is a very ill little girl.
Five-year-old Lacey lives with her parents, Nick and Heidi Ernst, and her new dog Squirt in a quiet Arlington subdivision. But for much of her young life, her second home has been Children’s Hospital in Seattle, where she has undergone seven heart surgeries and one surgery to implant a feeding “button” in her belly.
While Lacey was still in the womb, doctors detected a severe heart abnormality known as Hypoplastic Left Heart Syndrome.
“Lacey’s left side of her heart is underdeveloped,” explained dad Nick Ernst. “And her heart valve was leaking as well.”
The condition is often associated with Down’s Syndrome, and the parents were advised to have an amniocentesis procedure to determine if their unborn child showed signs of chromosomal abnormalities. Nick and Heidi declined to have the test.
“We were content to take her as God gave her to us,” said Nick.
Lacey does not have Down’s Syndrome, but her medical condition is serious. At three months of age, Lacey had the first of a series of reconstructive surgeries, with the second one at six months old. She was scheduled to have the third surgery, the Fontan procedure, when she was three years old, but doctors decided they had to first fix the leaky valve.
The repair seemed to work—until the replacement valve ruptured. In an emergency surgery, surgeons installed a metal valve. A few days later, Lacey was implanted with a pacemaker because of irregular heart rhythms. The metal valve was later replaced with a pig valve, but even though she is on an anti-coagulant regimen, blood clots began to form and limit the effectiveness of the valve.
In November, just a few days after her fourth birthday, Lacey was placed on the heart transplant list.
She has been unable to take food orally since she was an infant; the energy required for her to chew and digest food is more than the calories she can consume. Lacey now has a gastrostomy tube through which she receives her nutrition four times a day. She also takes 14 different medications daily. The heart defect has affected her balance and physical development, and her parents must be extremely vigilant to ensure Lacey doesn’t contract even a common cold so she can be ready for the transplant procedure.
The Ernsts are a family of modest means. Nick and Heidi met when they both worked at the Smokey Point Jack in the Box restaurant, but Heidi is unable to work now due to the level of care needed by Lacey. Nick, who is partially disabled, still works at the restaurant part-time. Although Lacey’s major medical needs are covered by her state-sponsored medical insurance, the family is looking at as much as $50,000 in out-of-pocket costs associated with the transplant.
Mary Jane Harmon, the executive director of the Arlington-Smokey Point Chamber of Commerce, often visits the Smokey Point Jack in the Box restaurant, and noticed that Nick was gone from the store for awhile. When she commented that she’d missed seeing him, he told her a bit about his daughter’s condition.
“She was shocked,” said Nick, “and immediately offered to help organize fundraisers or whatever else we needed. My boss Alma has also been very supportive and understanding, along with everybody at the Parrs Group (the franchise owners).”
A chamber member, Affordable Dental Care, is planning a big fundraising event for Lacey in conjunction with the company’s grand opening at the Cumulus Park building in Smokey Point on Saturday, July 27, from 12 to 4:30 p.m.
The event will feature a catered lunch of BBQ ribs and chicken, a bouncy house for kids, music, and lots of prizes. In addition, fellow businesses are invited to host a booth at the event for a $50 booth fee. The fee will help offset the cost of the event, with the balance donated to the Ernst family.
Donations will be accepted throughout the day, directed to the Children’s Organ Transplant Association (COTA) to assist families like Lacey’s with transplant-related expenses.
Contact Dr. Jason Bressler at adcsmokeypoint@gmail.com for more information about hosting a booth at the event.
“We are so blessed by the outpouring of support we’ve received,” Nick said. “Financial contributions help, of course, but we’re also grateful for the prayers and emotional support.”
To help with Lacey’s ongoing medical costs, visit http://cota.donorpages.com/PatientOnlineDonation/cotaforlaceye/.
via Community rallies around 5-year-old heart transplant candidate :: North County News for Marysville WA and North Snohomish County.
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