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Lifestyles Year in Review
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I’ve met some amazing people in Washington and Greene counties throughout my career, but 2013 was particularly humbling.
Several families welcomed me into their homes and shared personal stories that deeply touched my heart, and based on the outpouring of love and support, the community embraced their struggles as well.
Friends and strangers alike loosened their purse strings to donate money for medical expenses, and random acts of kindness during some of the families’ most difficult days were never in short supply either.
But above all, it’s the families who continue to be the biggest inspirations.
Here is a look back, in no particular order, at some of the remarkable families who were introduced to Observer-Reporter readers this year.
Haylee LaBarbera, 15, and her 11-year-old sister, Abbie, captured the attention and compassion of readers near and far.
At a Taste of the Town fundraiser sponsored by Consulate Healthcare of North Strabane, $21,600 was raised to help with the girls’ medical expenses.
Haylee and Abbie, daughters of Mark and Jen LaBarbera of North Strabane Township, were born with EB, a simple acronym for a very complex, debilitating disease known as Recessive Dystrophic Epidermolysis Bullosa.
EB is caused by an inherited genetic abnormality that leads to a lack of functional collagen, resulting in chronic, painful blistering of the skin. It can occur in various forms, from mild to severe. The LaBarbera sisters have the most severe – and rare – form of EB. Their skin is so fragile that the slightest touch or minor friction can cause blisters. There is no cure or treatment for EB, except for daily wound care and bandaging.
Haylee’s condition is worse than Abbie’s.
“She’s almost like a burn patient,” Mark said when describing Haylee’s daily routine. “What she goes through every single day, some people don’t go through in a lifetime. It’s an incredible feat for any person.”
The medical expenses associated with the girls’ disease are quite high. They require specialized care, and travel to the EB Center at Cincinnati Children’s Hospital to receive it. EB is the only hospital in the United States with protocols in place to treat EB patients. Dentists, ophthalmologists, cardiologists and surgeons from across the country who have trained themselves to treat EB patients periodically gather at the center to provide medical care. The family makes two to three trips a year, depending on what surgeries the girls need, and whether they can afford it.
Mark and Jen both work full time, and Mark has taken on a part-time job, but much of the girls’ out-of-state and out-of-network care is not covered by the family’s health insurance. The money donated at the fundraiser will help ease their financial burden.
Aidan Knox
Aidan Knox, 10, of Bentleyville has returned to school, and on Nov. 22, the day before leaving for his Make-A-Wish trip to Disney’s Give Kids the World Village in Florida, he got his first “real haircut” in more than a year.
“He was so excited to buy a comb and style his hair. It was a pretty cool and emotional moment,” his parents, Lance and Jamie Knox, wrote on their Live the Proof for Aidan Facebook page.
Aidan was diagnosed with Ewing’s scarcoma, a rare form of bone cancer, on Sept. 21, 2012.
After enduring a grueling nine-month regimen of radiation and chemotherapy, Aidan was given a big thumb’s up from doctors Aug. 23 after body scans showed no signs of cancer. Three months later, on Dec. 4, a followup scan confirmed he is cancer-free.
“He doesn’t realize how strong he’s been,” Jamie said. “He’s been fantastic. He took it better than we did.”
The aggressive treatment included multiple two- and five-day stays for chemotherapy in the Oncology Child Life Department of Children’s Hospital of Pittsburgh, plus 31 weekday radiation treatments.
In addition to the Facebook page, Lance created a YouTube channel called “Songs for Aidan,” with the hope that musicians and artists would offer a word or two of encouragement for Aidan and play a song for him.
The response was overwhelming, with songs and well wishes coming from around the world. They definitely lifted Aidan’s spirts and helped his family get through some of their darkest days.
“I was not in a good place when this happened,” Lance said. “‘Songs for Aidan’ really helped me focus, and corresponding was therapeutic. Just seeing how much love people have is so amazing.”
Steve Burns of “Blue’s Clues” fame performed his song, “Mighty Little Man,” for Aidan, and the family’s favorite artist, Jim Broggia, a singer-songwriter from Philadelphia who, in 1998, co-wrote “Glory,” performed an exclusive version of “Live the Proof,” a song about the power of positive thinking and positive action.
In October, the family held a “Songs for Aidan” fundraiser at Christian W. Clay Winery in Chalk Hill to benefit the Oncology Child Life Department.
James Beatty of Bentleyville was visibly weak and jaundiced.
But he had such a fighting spirit, and his positive attitude was unshakable, despite the death sentence he had received just five weeks earlier.
“That’s all I’ve got,” the 38-year-old said, referring to his attitude. “If I don’t have that, I’m not going to make it. All I can do right now is go day to day.”
Two weeks after our interview in late May, Jim passed away at UPMC-Shadyside hospital, Pittsburgh.
Jim was diagnosed on May 15, 2010, with stage IV colon cancer that had metastasized to his liver. The diagnosis came just seven months after he and his wife, Casey, had married.
Jim’s health began to decline when he started experiencing pain in his abdomen, which the couple attributed to either a urinary tract infection, hernia or the poor eating habits Jim had developed while working long hours on the gas wells.
Then one day on the job, he buckled in pain. Three days later, on a Wednesday, he went to the hospital. He was diagnosed immediately. The next day, he was at UPMC Hillman Cancer Center for a consultation, and on Friday, he received his port.
Jim went through several rounds of chemotherapy and radiation to shrink the tumor, including 10 weeks of chemotherapy before he had six to eight inches of his colon surgically removed to disconnect the blood supply to his liver.
“For everything we’ve been handed the last 2 1/2 years, we’ve made the best of it,” he said.
A fundraiser sponsored by First Presbyterian Church of Bentleyville to help with Jim’s medical expenses was held June 1 at Knights of Columbus Hall. Jim had planned to attend the dinner, but he was too ill to make it.
Silas Stokes
Silas Stokes is walking.
And that is big news for this 16-month-old Hopewell Township youngster.
Silas, son of Jolene Moore and Jonathan Stokes, was born Aug. 8, 2012, with Osteogenesis Imperfecta, or brittle bone disorder. He had 23 fractures to his ribs, femurs, left foot, right clavicle and skull, plus a compression fracture of the spine at birth. Even the slightest movement typically associated with an infant resulted in excruciating pain.
“We were grabbing his ankles and lifting him when we changed his diaper. We were doing that not knowing his bones were broken,” Jolene said.
Because OI is so rare, many health-care providers, according to the Osteogenesis Foundation, may never have treated an infant with the disorder. As a result, the couple did not immediately receive a diagnosis, even though Silas was born with a “squishy” head, one of the symptoms of OI, and his right humerus was cracked in utero. It had healed, however, before he was born.
It wasn’t until the day they left the hospital with their son that the couple received some direction – and eventually, some hope.
“Silas is doing phenomenal,” Jolene said a few days before Christmas. “Since he started weight-bearing, some of the bowing in his legs has started to correct itself.”
Since June, the family has been traveling every other month to a hospital in Delaware that specializes in OI. They originally had planned to seek treatment at Omaha Children’s Hospital, where expandable metal rods would have been surgically inserted into Silas’ legs, but they later learned the procedure would not be covered by their insurance.
However, Jolene said Silas’ secondary insurance found the hospital in Delaware, and the family couldn’t be happier.
“They consider it in network,” Jolene said. “We started going there at the end of June, and we’ve been going ever since. We love it down there, and we love the doctors. They know what they’re doing and how to handle him. He is walking. He doesn’t have any rods yet.”
The family will leave today for Silas’ next round of treatment, and they will be taking a little slice of home with them, thanks to some generous donations from the community.
Sparkling grape juice and chocolate from Sarris Candies will be on the menu when Jolene and Jonathan celebrate New Year’s Eve with parents whose children who have spent months, and even years, at the Delaware hospital. They also are well-stocked with new toys and toiletries for the youngsters.
“We want to help the people out who have been there for a long time. We want to make it fun,” Jolene said.
Kieran Stenson
Kieran Stenson’s hair may have grown back, but his younger brother, Kaden, told his mother he plans to keep his head “shaved forever” because “isn’t it nice mom that kids who still have cancer will still have me being bald with them?”
It was nearly one year ago to the day, Christmas Eve 2012, that Kieran’s mom, Abby, received a phone call that her son had a brain tumor. Abby’s husband, Ed, who is a paramedic for Washington Ambulance and Chair and a firefighter at Richeyville Volunteer Fire Company, was at work.
The Stensons knew something was wrong – but never imagined it was a brain tumor – when, in three short months, their 8-year-old son had grown 6 inches, and his voice was rapidly changing.
“His testosterone levels were off the charts,” Abby said.
Turns out, a 1-centimeter nongerminomatous germ cell tumor was growing on Kieran’s pineal gland, which produces hormones that influence sexual development and sleep-wake cycles. That’s what was causing their son’s accelerated physical maturation.
Following a slew of tests, including a decisive spinal tap, the diagnosis was confirmed by the Mayo Clinic.
Since Kieran’s oncologist, who also happens to be the chief of neuro-oncology at Children’s Hospital, initially suspected the tumor was cancerous, a treatment plan had been arranged, and Kieran had a port implanted on New Year’s Eve so he could begin chemotherapy.
“She took him as a patient because she has never seen a tumor that size. Normally, it’s five to 10 times bigger,” Abby said. “He’s an extremely healthy child. The only reason they caught it as early as they did was his testosterone level was so high.”
Kieran underwent six rounds of chemotherapy, alternating between three- and five-day regimens to shrink the tumor, and daily radiation treatments for six weeks.
The family also held several fundraisers, and each time, the community responded. They sold Team Kieran T-shirts, held bake sales and a spaghetti dinner, and they made gray and gold survivor bracelets – gray to represent brain cancer and gold to represent childhood cancer. His classmates even raised money with a hat day at school. A cousin serving in Afghanistan also had officers on his mission sign a T-shirt for Kieran, who is a military buff.
Kieran had his last chemotherapy treatment July 10, and on July 24, his port was removed. He and his family have since taken a Make-A-Wish trip to Disney’s Give Kids the World Village in Florida.
A little more than a year after their daughter, Lillian, was stillborn, Eric and Jessica Wright of Fredericktown were blessed not once, but twice.
Their sons, Levi and Owen, were born 11 months apart, and both were somewhat of a surprise.
When Lillian was stillborn, Jessica was diagnosed with thrombophilia, a genetic abnormality that increases the risk of blood clots. Doctors believe Lillian most likely died when a blood clot cut off her oxygen supply. In addition, Jessica was diagnosed with an autoimmune disease that attacks anything foreign in her body, such as an embryo. She was given just a 10 percent chance of carrying a child to term.
The Wrights were understandably upset, but they weren’t discouraged; they had too much love in their hearts not to share it with a child.
So, they decided to adopt.
That’s how Levi came into their lives.
But before the adoption became final, Jessica learned she was pregnant.
And that’s how Owen came into their lives.
In the spring, the Wrights were the March of Dimes Ambassador Family, and once again entered a family team, Lillian’s Legs for Life, in the March for Babies to raise money for the organization that’s dedicated to improving the health of mother and babies.
“It’s all been manageable,” Jessica said. “We’ve prayed for this for years.”
But it was Owen who was the most calming influence.
“I didn’t accept the pregnancy until I felt him move. If I felt him moving, I knew he was OK,” she said. “He never stopped moving. He had the hiccups constantly. The doctor said that was a good sign that all systems were working. It was like the Lord said, ‘Let your mom know you’re OK.'”
Three hours after Jessica went into labor on Jan. 25, 2013, Owen was born.