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World Down Syndrome Day: Lehigh Valley location serves as important resource to families

Down Syndrome
Jennifer Paugh
Jacob Paugh and his family live in Fogelsville and use the down syndrome resources available in the Lehigh Valley.

UPPER MACUNGIE TWP., Pa. — To Brian and Jennifer Paugh of Fogelsville, their son Jacob is a typical little boy.

“He's a wonderful kid, typical, you know, 4-year-old," Jennifer Paugh said. "He's into everything and wants to get into trouble and climb all over and he's doing really well.”

Although Jacob’s parents see him as a typical kid, he has some atypical health needs.

  • World Down Syndrome Day is March 21
  • Eastern Pennsylvania Down Syndrome Center is one of just a few resources for families in the state
  • LVPG Down Syndrome medical clinic is part of the center

Jacob has Down syndrome, a condition in which a person is born with an extra chromosome — 47 instead of the typical 46.

Tuesday is World Down Syndrome Day, a time to bring awareness to the condition.

The Lehigh Valley has one of just a few Down syndrome resource centers in the state that serves people such as Jacob.

Like any parents, Jennifer and Brian Paugh said they are filled with pride when they look at their little boy.

"He is a joy to be around," Brian Paugh said. "He is a super active kid. He loves trucks. He loves being in motion all the time.”

Jennifer Paugh said she and he husband had a prenatal diagnosis for Jacob.

"I was 20 weeks along and they found he had fluid around his brain and his heart, so that was a red flag,” Jennifer said. “We were scared. We didn't know what to expect.”

The couple said they weren’t sure whether Jacob, their third child, would make it to his birthday.

Brian Paugh recalled that time in his life saying, “at that point in time, it was pretty concerning, because we didn't know anything. It looked like there might have been an issue with his brain, with his heart.”

Learning about Down syndrome

The Paughs soon learned their child had Down syndrome.

“When we got that diagnosis, to be honest with you, it was more of a relief than anything,” Brian Paugh said. “I thought, ‘My son's not going to make it to full term, we're going to lose this pregnancy,’ and then, ‘Oh, I can deal with Down syndrome.’ ”

Although the Paughs said they were relieved, they had little experience with Down syndrome and quickly started researching.

They came across the Eastern Pennsylvania Down Syndrome Center and felt immediate comfort when another parent with a child with Down syndrome talked about the resources available there.

“There's a list of sorts of conditions, medical conditions, other things that children with Down syndrome have more frequently than the typical population."
Dr. Donald Levick, Medical Director, LVPG Down Syndrome Medical Clinic

“There was someone for Jen to talk to and ease her concerns right away,” Brian Paugh said.

Next came the initial visit.

“It was the most amazing appointment,” Jennifer Paugh said. “It was two hours long, with a set of pediatricians that have so much experience with Down syndrome, with patients with Down syndrome.”

“There's a list of sorts of conditions, medical conditions, other things that children with Down syndrome have more frequently than the typical population,” said Donald Levick, medical director for the medical side, now referred to as LVPG Down Syndrome Medical Clinic.

'It's been very rewarding'

The clinic, founded by the Eastern Pennsylvania Down Syndrome Center, offers resources, education, advocacy and programs to more than 250 patients and their families.

“We do a lot of programming for new parents," said Kerri DiDario, the program's executive director.

"We have a new expecting parents program where if a family gets a diagnosis, they give us a call and we have a family on the other line that has been through an experience like they're ready to go through.”

Located in LVHN’s Health Center at Trexlertown, the center provides services and support to individuals with Down syndrome and their families.

“Then we provide educational advocacy for families who have children that are school age," DiDario said.

"If they need help with doing individualized education plans, or just getting support in the school setting, and we’ll actually go with them to some of their school meetings or just answer phone calls. Recently, we just started providing programming for teens and adults.”

Levick went into more detail.

"It's a comprehensive-care model," he said. "It's a holistic model. We meet with the family, and in long with myself or one of the other providers, we also have a therapist in the room, either an occupational therapist or a physical therapist, and they interact with the patient and the family.”

The pediatrician has been volunteering his medical expertise since the program opened in 1999.

“It's been very rewarding for me to spend all these years growing and learning and sharing with these families,” Levick said.

Offering an immense sense of peace

Through a new partnership with Lehigh Valley Health Network, Levick will not only continue to see patients, but he’ll be able to recruit new doctors.

“We knew that the sustainability of the resources that we needed both the physicians, the therapists, was going to be very difficult to fill on a volunteer basis, especially at the frequency of the clinic sessions that we have,” he said.

The center now will be referred to as the LVPG Down Syndrome Medical Clinic.

Brian Paugh said the resource is so important to his family because “not every physician has a background with Down syndrome. So when you take your child to the doctor, and you expect them to know all things medical, they may not have ever experienced working with a child with Down syndrome.”

Most patients, as does Jacob, visit once a year for a medical exam and have other available resources throughout the year. It’s a place that Jacob’s parents say has offered them immense peace of mind.

They now are involved with volunteering and on the board at the center.

“It was comforting," Jennifer Paugh said. "I would say is the best way to describe it. Just knowing that they had so much experience. They've seen children with disabilities with abilities."

Interested patients can find more information on LVHN’s website and those with the Eastern Pennsylvania Down Syndrome Clinic said they are always looking for volunteers.