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The touch of love

  • DONALD R. SERFASS/TIMES NEWS Without saying a word, Kyle Hacker looks directly into your eyes and invites you into his world.
    DONALD R. SERFASS/TIMES NEWS Without saying a word, Kyle Hacker looks directly into your eyes and invites you into his world.
Published August 02. 2013 05:05PM

Kyle Hacker silently reaches out and holds your hand.

Or he'll approach and take your arm and look into your eyes. Maybe he'll squeeze your finger.

In a moment, he'll smile.

All of it is non-verbal, but it's his way of saying hello.

Even more, it's his way of getting to know you.

If you're perceptive, you'll understand that he's inviting you into his world.

He wants you to join him and to share in what he has to offer.

And what he has to offer is unconditional love.

As you accept, you realize you're part of something incredibly special, because Kyle is not only one in a million, he's one in 300 million and even greater. Kyle breaks new ground with every breath, and defies medical experts with every step.

The Tuscarora resident thrives despite unprecedented obstacles. And it's impossible to label him.

In fact, Kyle is believed to be the only person born with a combination of two very rare congenital disorders - Trisomy 9 and Prader-Willi Syndrome (PWS).

Born one month premature, he was diagnosed with Trisomy 9 as an infant. It's a life-threatening chromosome abnormality which typically proves fatal at birth.

"Usually those kids don't live long," explains his mother Connie, a school bus driver. She describes the genetic cause of Kyle's condition.

"The 15th chromosome broke off and landed on the #9."

Individuals with Trisomy 9 share several characteristics including medical issues, physical challenges, and behavioral traits. Some exhibit developmental delays, cognitive challenges and low muscle tone. But each affected person is unique.

On top of that, Kyle was diagnosed a bit later with PWS, another rare condition affecting less than 200,000 people in the U. S., according to the National Institutes of Health. He may be the only person to have both disorders.

There are many mysteries associated with Trisomy 9 and PWS. Medical science continues to be baffled over the root causes.

But Connie knew something was amiss. For her, it was her first pregnancy and new territory. But something was wrong.

For one, she simply didn't show the familiar baby bump.

"When I laid down, it didn't look like I was pregnant," she reveals. "And I told that doctor that I don't feel any movement at all."

Plus, when her water broke, "it poured like it was gushing. I had 22 hours of labor and had to have a C-section."

At Kyle's birth, the staff rushed him to a different room. Connie remembers: "I couldn't hear the baby. Kyle didn't cry. They said there was something wrong with his lungs. I was in the hospital nine days. At first they wouldn't bring him to me. Then they brought him in an incubator unit."

Hubby Dwayne, a corporal with the Tamaqua Police Department, remembers the emergency procedures performed right from the start. The doctor at Lehighton's Gnaden Huetten Hospital "did something similar to CPR," says Dwayne.

Ultimately, the family consulted with Dr. Carol Anderson, a geneticist at Jefferson Hospital, Philadelphia, where the picture became clearer: Kyle was a very special child. How special? Well, there might be no other in his situation.

Along the way, there were major setbacks as Kyle required intensive care. All of it left Connie puzzled.

"I don't do drugs and I didn't drink and so how could I have a child with all these problems?"

Dwayne agrees, noting that the reality of being the parent of a special-needs child can be overwhelming.

"You go through stages," he says. "First there's a blame game, and then there's grieving." Over time, you learn and adjust.

Kyle attended various schools starting at age 3 - Rush Elementary, United Cerebral Palsy preschool, Lighthouse Adult Day Care, the Intermediate Unit at Marlin, and Tamaqua Area School District, where he graduated with the class of 2012. In the school magazine, classmates said Kyle's attendance and graduation blazed a trail.

"Kyle left his mark on the entire nation," they wrote. On a personal level, they observed: "He enjoys instigating trouble and being a ham and laughing at everything. He has a talent to remember everyone he meets."

Kyle recently underwent spinal surgery for scoliosis, or curvature of the spine, common with the PWS condition. He suffered respiratory arrest after surgery.

"He fell," says Dwayne. "He was blue." Dwayne jumped to action and saved Kyle through CPR. He was then treated at Geisinger Health Center, Danville. Actually, Kyle has been airlifted to that facility three different times for medical emergencies.

To help him breathe and avoid aspiration, Kyle underwent a tracheotomy. He is now fed through a tube in his abdomen, called a "Mickey button."

At age 22, Kyle receives care around the clock. Nurses work three shifts inside the family's comfortable Porter Street home.

There, Kyle has settled into a routine and is living a happy life.

He has an affinity for water and enjoys traveling to the shore, where the rhythm of the waves is therapeutic. He's visited Disney, Knoebels and other theme parks. At Dorney, he rode the Steel Force rollecoaster four times in a row. He also enjoys shoe shopping.

At home, he watches Disney movies and plays with rambunctious Jack Russell pups Casper and Nittany.

Kyle demonstrates awareness which, in some ways, is missing in the rest of us.

For instance, when he walks outdoors and raises both arms skyward, it's a signal that rain is imminent. For some reason, he knows this. But you need to spend time with him to learn these things, to know his language. Kyle knows how to express thoughts and feelings, but does so differently from the rest of us.

And he's very playful and unpredictable, says brother Shane, 16.

"He'll be nice, and touch your cheek. Other times he'll grab your collar and laugh. He has a good sense of humor."

Kyle expresses love through touch and has no problem communicating with those close to him.

For example, a quick tossing motion is Kyle's way of throwing kisses. And you better be ready to catch them because Kyle has plenty more in his arsenal.

Blazing a trail in medical science is daunting, but Dwayne and Connie are thankful for the gift.

"When I have a bad day at work, I come home and see him and it takes it all away," says Dwayne. "It's made us a closer family. We have a different outlook on life. We learned to appreciate what we have."

The best part, they say, is coming home to a smiling face and warm heart, and caring hands always ready to toss a kiss.

Kyle knows that a kiss is timeless and universal, an ever-silent expression of affection.

The Hacker household is filled with affection, a deep sense of love.

And it's a kind of love that doesn't need a voice because Kyle is a blessing beyond words.

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