Manor Township resident Eve Anna Weaver remembers the birth two years ago of her sixth child, Estelle, all too well.
Four days after Estelle was born, the doctor called and said the baby was diagnosed with phenylketonuria, a rare genetic disorder that prevents the normal breakdown of a protein found in some foods. The protein builds up in the blood and tissues, preventing the brain from developing properly.
Weaver, 36, and her husband, Kenneth, 41, were told to immediately call the Clinic for Special Children.
“So, we did. The next morning, Estelle was being seen by one of the doctors there,” Weaver said. “Doctors there are knowledgeable and on the cutting edge of medical treatment. We are grateful to the Lord for the gift of this clinic.”
Estelle, 2, is one of 1,200 patients currently being served by the clinic at 535 Bunker Hill Road in Strasburg Township. Patients span the globe, with some from as far away as Brazil, eastern Europe and Asia.
“There isn’t a lot of research going on in other places around the world, so we have patients that seek us out for expertise,” said executive director Adam Heaps, who joined the clinic in 2010 as a lab technician. He became executive director in 2016.
The majority of patients — 75% — are from Pennsylvania, mostly from Plain sect communities.
The clinic, which was established in 1989 by Dr. Holmes Morton to treat Amish and Mennonite patients with rare genetic diseases, relies on fundraising to cover most of its operational budget, which stands at $5 million for the current fiscal year.
“We don’t accept health insurance because the majority of our clients don’t use private or public insurance, so there is no reason to build that infrastructure if no one will use it,” Heaps said. “We charge a nominal amount of $50 for a standard appointment.”
More than one third of the money comes from a series of annual auctions that have collectively raised more than $15 million to support the clinic’s operations.
“Auctions are essential”
Heaps said the clinic tries to keep costs down for its clients, a demographic that favors cash payments while shunning health insurance and government aid.
Less than 10% of the clinic’s revenue comes from fees or lab services it provides. The rest of the revenue comes from sources including its annual auctions, the first of which took place in Lancaster County in 1991.
“That’s where the community comes in,” Heaps said. “The auctions are essential to keep all our services accessible for the families who need them.”
Auctions in Mifflinburg, Roaring Spring and Shippensburg, all in Pennsylvania, and one each in Shiloh, Ohio, and Memphis, Missouri, were added after the inaugural one in Lancaster County. A seventh auction debuts this year in Stanley, New York.
The auctions were cancelled in 2020 because of the COVID-19 pandemic; however, when they resumed in 2021, the six auctions combined raised more than $1.3 million.
Lancaster County auction
The Lancaster County auction, which to date has raised more than $7.5 million, is made possible through donations, from furniture and produce to quilts and baked goods.
“We appreciate the support of the Lancaster community,” Heaps said. “To see how much money is raised in a day to keep services affordable for families that need it … it has an impact far beyond the border of Lancaster County.”
Heaps said organizers estimate people will be able to bid on more than 2,300 items at the June 18 Lancaster County auction, ranging from small household items to a brand-new loader tractor.
The auction will be held from 7 a.m. to 4 p.m. at Leola Produce Auction, 35 Brethren Church Road, Leola.
Other items up for bid will include quilts, carriages and carts, household furniture, theme baskets, farm supplies, hardware, tools, outdoor furniture, shrubbery, plants, collectibles, toys, and model tractors.
“We estimate that approximately 5,000 people attend the Lancaster auction every year,” Heaps said. “It’s completely run by volunteers and a nice encapsulation of Lancaster County.”
Plans for a new location
Heaps said the clinic recently purchased about 10 acres along Old Philadelphia Pike (Route 340) in Leacock Township with plans to build a new facility. He declined to disclose the purchase price.
“We’ve had a challenge for a number of years as the organization has grown. We are surrounded by a preserved farm so we can’t build anymore on that property,” he said. “We purchased some land in Leacock and are working through the process to move that project forward. We are still working on the approval and design process.”
The Leacock Township location would be more central for the clinic’s patients, which are clustered along the eastern side of the county.
The township amended its zoning ordinance map so the clinic can eventually relocate to 3829 Old Philadelphia Pike. The amendment changed a section of the property from a rural residential to a rural village zone, allowing the land to be used for commercial, medical and other purposes.
Heaps previously told LNP | LancasterOnline the idea is to build at the new site and move the entire operation, as collaboration between the doctors, lab staff, researchers and others is key to the clinic’s work.