The young Amish father worked in the April sunshine, mulching and digging in a newly created garden at the Clinic for Special Children in Strasburg Saturday morning.
Two of his young sons stood happily atop a towering pile of mulch in a dump truck, and shoveled the mulch —with mixed results — into wheelbarrows down below. One of the boys, just 2 1/2 years old, was holding a shovel that was almost taller than he was.
“They like to help,” the father said, with the hint of a smile.
This Amish dairy farmer actually has three sons.
His youngest was the reason the family was at the Clinic for Special Children, planting the Celebration Garden to mark the medical facility’s 25th anniversary.
A rare disorder
The Clinic for Special Children specializes in diagnosing, treating, studying and discovering genetic disorders, particularly those found in the Plain community.
Many of the volunteers helping to plant the garden Saturday had come because — like the Amish dairy farmer — they were deeply grateful for the clinic’s work.
That father, who asked that his name be withheld, said his youngest child, who is 15 months old, has a rare congenital malformation disorder called CODAS.
It’s an acronym for cerebral, ocular, dental, auricular, skeletal syndrome.
When he was born, even the physicians at Penn State Hershey Medical Center “didn’t know what to do for him,” his father said.
So the Hershey doctors called the Clinic for Special Children.
Dr. Kevin A. Strauss, the clinic’s medical director, diagnosed the child when he was 10 days old.
The child since has had cataract surgery. He has a breathing tube.
When he contracted the respiratory virus known as RSV this past winter, Dr. Strauss and a clinic nurse made frequent visits to his home.
“We’d be lost without the clinic,” his father said.
His son doesn’t have a normal life expectancy.
CODAS, especially as seen in the Amish, is a “terrible disease,” said Dr. Erik Puffenberger, a molecular geneticist at the clinic.
But the farmer doesn’t dwell on dire and dreaded possibilities.
He said his youngest son’s medical issues led the family to find “a lot of new friends” at the Clinic for Special Children.
“It really opened my eyes to what the clinic does for the Amish community,” he said.
Helping plant the garden was an opportunity this father readily embraced.
The stones used to build an elegant sitting wall for the garden came from his meadow.
He and five others dug out several tons of stones for the wall.
‘Sense of renewal’
On Saturday morning, several fair-haired Amish girls tested the wall, as professional landscapers — volunteering their expertise and labor —joined clinic staffers, board members and families in planting the garden.
Caroline Morton, who founded the clinic in 1989 with her husband, Dr. D. Holmes Morton, said the new garden would be a place where families and patients can spend “a few private moments.”
“It’s not uncommon for whole families to be here,” she noted.
The garden also will be used by the Special Hearts group, a support group for older patients with serious disabilities.
“The garden is all about a sense of renewal,” as the clinic embarks on its next 25 years, Caroline Morton said.
Her husband, Dr. Morton — wielding a chainsaw instead of his usual stethoscope — took a break from pruning fruit trees to reflect on the Plain community’s “long history”of support for the clinic.
Its original building was raised on land partially donated by the Amish grandfather of two of the clinic’s earliest patients.
“Everyone thought it was crazy putting a clinic out here in the middle of nowhere,” Dr. Morton said.
But the clinic now sees patients from 34 states and 14 countries, he said.
Because of its cutting-edge research into inherited disease — it has identified 147 unique genetic mutations — it draws medical researchers from around the world.
The clinic’s growth over the past 25 years is a “reflection of the need,” Dr. Morton said. “And we’re pretty good at what we do.”
The clinic has made particular strides in treating maple syrup urine disease, a metabolic disorder that impairs the body’s ability to break down certain amino acids.
Children with MSUD used to die as newborns; most of those who survived were severely disabled.
Dr. Morton said the clinic, since its founding, hasn’t had a single death from MSUD.
Clinics modeled after the one in Strasburg are being built, or have been built, in central Pennsylvania, Ohio, Indiana and Wisconsin. And one may be built in Brazil.
A grateful mother
When they were expecting their second daughter, Vanessa Palamanos and Luciano Junqueira — natives of Brazil — went to Hawaii, where Palamanos’ mother and sister were living.
Their baby, named Julia, was born in Hawaii.
Genetic screening revealed the newborn had glutaric aciduria type 1, or GA1, formerly known as “Amish cerebral palsy.”
It’s an inherited metabolic disorder — similar to MSUD — in which the body lacks an enzyme necessary for breaking down certain amino acids found in dietary proteins.
Palamanos and Junqueira were devastated. The Brazilian and Hawaiian doctors they consulted seemed to have no idea how to treat the disorder.
Palamanos said she and Junqueira feared losing Julia, knowing it “would destroy us.”
“I was terrified,” she recalled.
On the Internet, Palamanos came across a video of Dr. Morton talking about the Clinic for Special Children, which had developed a special medical formula for children with GA1.
“I had a feeling: ‘This guy, this doctor, knows how to save my baby,’” she recalled.
Palamanos decided to move her family to Lancaster County, to be near the clinic.
That was in 2011.
Now, three years later, Julia is an adorable, spirited child, with red hair and a ready smile.
The horse shed outside the clinic was designed by Junqueira, who now works in Hawaii as an architect.
Palamanos, also an architect, said she hopes to return to Brazil someday, to help other families facing a GA1 diagnosis.
She has given support to another Brazilian family who has a child with the disorder; that family also has moved here to be near the clinic.
Palamanos’ gratitude to the Clinic for Special Children is evident.
“When they need the community, I’m here,” she said. “I will do whatever they need.”
Her eyes fill with tears. “These doctors here are heroes.”
A grateful father
When the clinic was founded 25 years ago, a Japanese maple was planted by the clinic’s entrance to honor the children who died before the clinic came into being.
Two iron sculptures of that graceful tree are in the works.
One will be auctioned to raise money for the clinic. The other will be erected in the Celebration Garden.
They’re being created by the grateful Amish father of seven children, three with severe acid reflux.
Because of the Clinic for Special Children, his children now are healthy.
“It’s a great place,” their father said.
Local landscaper Jim Keener visited the clinic in January, and was given a tour by Matthew Sware, the clinic’s development director.
Keener returned the next day, eager to transform the clinic’s patio area, which sits above a wooded area and stream.
“The setting is incredible here,” Keener said. “It’s just a matter of adding to it.”
Keener’s crew worked with volunteers to terrace the garden, and expand the planting area.
Garden Spot Village, the retirement community, brought tools and mulch.
Volunteers planted greenery and flowering shrubs donated by local nurseries.
A family from Philadelphia’s Main Line was there helping alongside Amish, Old Order and modern Mennonite families.
“It’s always been the most important part of the clinic, that the people we’re serving understand what we’re doing, and they’re part of it,” Sware said, noting that Saturday was “emblematic of that.”