Source: The Mercury                                          

By Brandie Kessler,

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POTTSTOWN — Today, Dillon Kuenzi will celebrate his third birthday. But Dillon's mom and dad won't have stressed over whether to buy him the brightly decorated miniature cake of his own that he can delve into, or whether a homemade cake would be better.

They won't have struggled with deciding whether to buy the bright green wrapping paper with the race cars on it or the bright blue wrapping paper with the firetrucks on it.

They will not have worried about making sure they fully charged the battery for the Big Wheel, the surprise gift they saved for last that they'll bring out for him after he's already opened all his other gifts.

Instead, they will be thanking God for giving their son the strength to reach his third birthday, and for giving them the strength to help Dillon on his journey.

Dillon is different than most children his age. Dillon has cerebral palsy.

It's possible he may never be able to swallow his own saliva let alone birthday cake. It's possible his brain function may never allow him to see bright colors, like those on colorful wrapping paper or in a beautiful sunset. It's also possible that he may never be able to enjoy toys or games the way his peers do.

But holding their faith in God close to them, as well as their belief in the kindness and generosity of others and in the miracles of science, the Kuenzi family knows the odds their son is faced with and yet they still hope for more.

"He was planned," Tiffany Kuenzi said of her oldest son, Dillon Josiah Kuenzi. He was 6 pounds, 10 ounces. The pregnancy, she said, was "picture perfect."

She and her husband, Josiah, had conceived within a month of their marriage. She said learning she was pregnant with Dillon was hearing that God answered their prayers for a family.

"I couldn't have asked for anything better," Kuenzi said.

On June 16, 2006, Kuenzi went into labor and things were smooth up until she was admitted into the hospital.

But in the hospital when Dillon was born, Kuenzi and her husband realized pretty quickly that something was amiss.

When the nurse "yelled at my husband to quickly cut the umbilical cord, we realized something wasn't right," Kuenzi said.

"'Why isn't he crying?'" she recalled both her husband and herself asking numerous times.

She learned that Dillon wasn't breathing. His color was very gray. Something was wrong.

After seeing him for just a few moments, Kuenzi said her brand new baby boy was whisked away.

More than an hour passed before she was able to see her son again and then he had been intubated, a tube put down his throat.

Although he was off the oxygen and breathing on his own within hours, his newborn body had experienced seizures and doctors were sending him to St. Christopher's Hospital for Children in Philadelphia, where he was admitted into the Neonatal Intensive Care Unit, or NICU.

It wasn't until six days after Dillon's birth — her own 21st birthday — when Kuenzi was finally able to hold her baby in her arms.

After five weeks in the hospital and numerous CAT scans, MRIs and various other tests for brain function, among other things, Kuenzi and her husband were told Dillon had brain damage which was the result of his not breathing at birth, and they were sent home to care for their special little boy whose future was unknown.

"They told us before we left the NICU they don't know" how Dillon is developing, Kuenzi recalled. "Because his physical (ability) is so low, it's possible he might be feeling and thinking but unable to tell us.

"All of his injuries are in his brain," Kuenzi added, noting how difficult it is to be unsure of what is going on inside of her son's body and brain. "Anatomically, he's fine."

She noted that Dillon has failed hearing and vision tests, however, it is likely that his ears and eyes are fine, and the problem is likely in the way his brain receives, or doesn't receive, the receptions from his eyes and ears.

Dillon cannot swallow his own secretions and gets all nutrients through a G-tube, or gastric feeding tube.

"He can't cry, he can't coo, he has a happy sound and an angry sound," Kuenzi said.

She pointed out the tubes and wires attached to Dillon, among them oxygen which he is on regularly and a heart monitor which stays on him throughout most of the day. "The only way we know if he's in pain is if his heart rate goes up," she said.

Although she maintains a hopeful outlook for her son, you can see the pain and frustration on her face when she recounts memories of incidents when she hasn't been able to tell what her son might want. Recently, Kuenzi said, Dillon spent an entire night lying on the clip from one of his tubes unable to move and unable to communicate with her or his father about possible discomfort. She woke in the morning to discover he'd been lying on the clip and had the imprint of it on his back. The frustration in these moments is seething.

At one point closer to the beginning of Dillon's life, Kuenzi said, the frustration and pain, resentment and anger at the world and at God was almost too much to bear.

She contemplated leaving. Just picking herself up and going somewhere, anywhere to get away from the confusing fate she and her husband and son had been dealt. When the realization sunk in that no amount of running could ever truly remove her from the situation, Kuenzi did contemplate taking her own life. Sharing the brutally honest feelings she once experienced, and expressing the thoughts of suicide that once crossed her mind, she is quick to say that she realized taking her own life would not make the problem go away either. She now admits that perhaps the problem she was living with was her perception of a blessing in the form of her son.

"I knew God allowed this situation," Kuenzi wrote in a story about her family which she passes out to strangers who are curious about Dillon and how he came to be the way he is. "God would carry me through it."

Throughout Dillon's infancy and now toddler development, there have been some progressions and some fallbacks. When Kuenzi brought her son home she was given some options on therapies, such as physical therapy, speech therapy and vision therapy, for Dillon.

"He's been in all those since he was born," she said. "He wasn't making progress."

Recently, however, Kuenzi learned about the Institutes for the Achievement of Human Potential and attended lectures with her husband.

Now, each day Kuenzi, with the help of a volunteer or with Dillon's nurse, Robin Schoener, goes through therapies and patterning, working with Dillon to develop his five senses. The family built a ramp, among other things, in the living room of their Pottstown home which allows gravity to aid Dillon in small movement, which will hopefully one day help lead to his ability to crawl or gain some strength and function of his limbs.

Another huge area of potential in Kuenzi's life and in that of her husband and Dillon came in the form of a new addition to the family just weeks after Dillon's first birthday.

On June 29, 2007, with the birth of their second son, JayDonn, Dillon became a big brother.

Kuenzi said JayDonn wasn't planned, but he continues to bring a tremendous amount of joy to their lives. He tries to interact with his brother, playing "games" like their own special version of Row, Row, Row Your Boat by sitting across from Dillon, who lays back on his mother, grabbing his hands and "rowing" back and forth together.

JayDonn also knows how to push some of the buttons on Dillon's heart monitor if it starts beeping and his mom and dad ask him to turn it off.

More than anything he brings lots of smiles to the faces of those around him.

"I can see already how God is using JayDonn to heal my heart as well as be helpful with Dillon," Kuenzi wrote on her blog which also details her family's story.

And while JayDonn is likely tied for first in the running for the families brightest joys, one of the biggest helpings of hope came from researching a treatment that could potentially have a profound impact on Dillon's life: a stem cell transplant.

Kuenzi said she was looking online thinking "there's gotta be something we can try" for Dillon when she came across what could be a life-changing procedure for Dillon.

"It's unusual to run into a mother who has a child with cerebral palsy worse than Dillon," Kuenzi said, maintaining a bright smile as she looked at her little boys, a perfectly healthy JayDonn, and Dillon who is living with his cerebral palsy.

Kuenzi said many doctors have been reluctant to give her any hope for fear it will just build her and her husband up only for them to be let down, or the doctors immediately dash her hopes by blatantly telling her Dillon will never progress much beyond where he is now.

But with those ideas not settling well with her, she took the matter into her own hands and did her own research. She came across a stem cell transplant procedure that seemed to be something to consider.

Coming from a conservative religious background, Kuenzi was quick to clarify that the stem cell transplant she looked into for her son is that of mature stem cells through an umbilical cord stem cell transplant. She learned there were procedures of its kind done in the United States, but only with the stem cells from the umbilical cord of the child in need of the transplant.

Kuenzi said she did not save Dillon's umbilical cord.

However, the procedure was offered for those who did not have their own stem cells for the procedure, but in order to have it done, the patient would need to travel to China.

If the idea of traveling to China with a little boy who needs oxygen and needs to be attached to a number of monitors wasn't daunting enough, Kuenzi said the pricetag was.

Having to raise more than $31,000 in order to pay for the transplant, Kuenzi said she nearly gave up before she even tried to make it happen.

"'How can I raise $30,000?'" Kuenzi recalled asking her husband.

His answer was simple: "Trust in God."

After all, God hadn't steered them wrong yet.

Kuenzi said when she let go of the worry and embraced the hope and faith that things would work out, things started to materialize.

Friends began raising money. People from church started raising money. Strangers started raising money.

Kuenzi said a connection through a friend of a volunteer who helps her with Dillon's therapy, called patterning, resulted in a group from Limerick Generating Station donating more than $5,000. A can in Friendly's restaurant in Pottstown has brought in donations. Through the blog where she shares her family's story (www.DillonsJourney.com) donations have come in.

Currently, more than $20,000 has been raised and Kuenzi has booked the trip to China for Dillon to have the treatment.

Dillon is scheduled to take the trip to China with Kuenzi and her mother-in-law at the end of July, if all goes according to plan. They do have the option of pushing the trip up or back as needed, but why wait if they can get there sooner?

Although the Kuenzi family and Dillon have made tremendous progress since Dillon's fragile beginning, there is still a great journey ahead of them. They realize that the stem cell transplant Dillon will be receiving may not solve everything he's faced with. In fact, it may not change anything.

But Kuenzi is emphatic that she cannot continue on without knowing if the option could help her little boy, which could in turn help other people who are living as Dillon does.

Some parents have lofty goals for their children's futures, such as seeing them become doctors, lawyers or marine biologists, but Tiffany and Josiah Kuenzi just want to see their oldest son, Dillon, smile, hear him laugh, and be able to communicate how he is feeling or what he wants.

Although today, on his third birthday, the Kuenzi's won't watch Dillon smiling goofily as they sing the chorus of Happy Birthday, the glow from four birthday candles (three and one for good luck) leaving shadows on his chubby face, they are able to be with their beautiful boy filled with the hope that maybe things will be different. And for now, by the grace of God, it will be enough.

To contribute to the fund established for Dillon Kuenzi to help pay for his stem cell transplant, visit www.DillonsJourney.com or send a donation to: Dillon Kuenzi PO Box 1366 Pottstown PA 19464. An online auction, the proceeds of which will be donated towards Dillon's treatment expenses, will begin tomorrow and run through June 24 at midnight. More information about the auction may be found at the above Web site.