Oxford woman living with rare disease of PKU celebrates Awareness Day-Term Life

OXFORD TWP.—Terri Pallini is a mother of two, has a brown belt in karate and lives with Phenylketonuria, or PKU. Although her illness requires a daily regimen of nutrition monitoring and regular blood work, Pallini is clear about one thing. She isn’t a victim and she isn’t suffering.PKU is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine.

Diagnosed late as a child, Pallini’s parents were told when she was in the early stages of development that she might only have one year left to live, but they didn’t accept that as an option and sent her to a specialist in Boston in the mid 1960s.

Today she is 51 years old and lives an active life in Oxford.

Describing her illness, Pallini said that the normal foods that we eat every day can be potentially toxic to her, so she must keep a close watch on phenylalanine levels that are often found in protein based foods, vegetables, fruits and grains as well as diet soft drinks.

One egg can be nearly half of the allotment she is allowed in one day, so the diet becomes a balancing act.

“I love my carbs, I love my pasta. I’m an Italian girl. There’s medical pasta and it’s $10 a bag for a one pound bag, well that’s not going to last through the week. So I get Asian noodles. You just have to improvise,” Pallini said.

Going out to restaurants can be another challenge, but Pallini is thankful for all of the resources available to her now including online menus.

“It just takes a little forethought, it’s hard to do anything spur of the moment,” she said.

So what happens when her levels are off and her phenylalanine intake is too high? The consequences can be disastrous ranging from general fatigue to loss of coordination and brain function.

While Pallini trained for ten years in piano and six years in voice, studying both in college, today her hobbies are more limited as she has recently begun experiencing a tremor in her left hand.

I come in and I feel like i’m dragging my tail and I’ve got my tremors, but relative to what else they see there it’s almost nothing.

To counter this, Pallini takes karate at a dojo in Washington Borough.

“I can’t even describe it. It’s really the best thing I’ve ever done. They don’t expect you to be an expert… Attitude is everything,” she said.

For her, karate is like sports therapy which helps her improve her focus and motor skills.

On PKU awareness day, Pallini mostly wants people to understand her rare disease, but stresses that this desire doesn’t come from an attitude of pity.

“That’s just part of life,” she said. “Everyone has something to deal with.”

Pallini still goes to her clinic in Newark, but now only for yearly checkups.

With statistics stating that only one in every 12,000 people are diagnosed with PKU, that means only 25,000 people are affected with the disease in the entire country. Pallini knows of no one else in Warren County.

“I come in and I feel like i’m dragging my tail and I’ve got my tremors, but relative to what else they see there it’s almost nothing,” she said.

Always hoping for a treatment or possibly a cure, Pallini stays positive and remembers that attitude is everything.