Lindsey: The Power of Faith
“When others are in need, we are all rich enough to be philanthropists.”
– Anonymous
Mike Cheung was named one of nine Ohioans of the Year in 2002.
“Mike has gone out of his way to help my daughter Lindsey,” said Gary Gozdowski. “They’re a great bunch.”
The December 29, 2002, article in The Plain Dealer newspaper in Cleveland, Ohio announcing the Ohioans of the Year reported that Mike Cheung and the pilots of Air Lifeline provide speedy access to specialized medical care. Air Lifeline is the oldest and largest national volunteer pilot organization in the United States, flying sick patients and family members free of charge to hospitals across Ohio and the country.
“We improve the quality of our passengers’ lives by providing access to specialized medical care they might otherwise not be able to reach,” says Ginger Buxa, director of outreach at Air Lifeline’s national headquarters in Minneapolis. “We remove the obstacle of distance. We rely on the services of 1,500 volunteer pilots nationwide. In 2002, those pilots transported nearly 9,500 patients and passengers free of charge to 450 destinations across the country at an estimated savings of. $4 million collectively this year for the patients,” Ginger said.
Gary Gozdowski, his wife Nellie and their now thirteen-year-old daughter Lindsey have flown with Air Lifeline nearly 30 times over the last eight years. Lindsey suffers from a rare genetic disorder known as Goldenhar Syndrome and has sought treatment across the nation in her quest for healing. She began her journey at a respected center for facial reconstruction in New York; however, their arduous expeditions ultimately led to Dallas, Texas and Dr. Kenneth Salyer. Before they discovered the World Craniofacial Foundation and its full-circle support, the Gozdowskis, who live in Sylvania, a suburb of Toledo flew with Mike Cheung numerous times, and he has selflessly offered his services 24/7. They will always consider an essential partner in of his daughter’s recovery.
.
Air Lifeline coordinates more than 650 flights in and out of Ohio each year, making Ohio the third-busiest state in the country, after California and Washington, for Air Lifeline missions. . “We couldn’t have done the surgeries without Air Lifeline,” reveals Nell. “The airfare would have been astronomical. There’s just no way we could have afforded it.”
“My average cost per mission is about $150 for gas and landing fees,” says Mike, who writes that cost off as a donation to Air Lifeline on his taxes. ” It’s not only a cost-effective good deed, it also gives purpose to an otherwise self-indulgent pleasure. I wanted to do something more useful with my flying than just boring holes in the sky,” he confesses.
“It is just astonishing to me how the right people have always miraculously appeared just at the right time,” muses Nell. “I’m not sure what we would have done without them – people like Mike and our stalwart circle friends who stand ready at a moment’s notice to help our family. We have much to be grateful for, indeed.”
“With my husband working long hours and our family numbering nine – with seven children – six girls and one boy, I’m not sure how we would have handled the travel and logistics of Lindsey’s treatment without dedicated, reliable help. Three families have stood by us — through absolutely everything — never requesting anything in return – ever. What a remarkable blessing.”
She refers to one couple in particular as “Lindsey’s angels.” My husband just happened to connect with them at a business conference. They were in their sixties, and they had never had children but loved and wanted them. Always on-call to watch the Gozdowski children if a surgery is required out of town, the couple once told Nell that they believe they were placed on earth for Lindsey.”
After two pregnancies, Nell Gozdowski knew something was just not right when she was pregnant with Lindsey. She insisted and persisted, but her doctor and trusted family friend just continued reassuring her everything would be alright – vehemently discounting her protests. She spotted throughout the first trimester and just did not feel right.
And when Lindsey came into the world thirteen years ago, Nell discovered her fears were, indeed, accurate. “I become enraged when they would not let me see my baby or hold her. I saw her only for an instant after she was born –when they scooped her up and whisked her away in tense silence, “ Nell recalls. “I do remember seeing her precious, little ear flattened against her head, but I had no idea what was going on. All I knew was that she did not look right.”
“Nobody would talk about it,” she protested. “I remember the pediatrician just saying we’d watch her – not offering any sort of explanation or prognosis. No one seemed to know what was wrong or really care. The worst thing is not knowing and the non-communication from the people who are supposed to know. I wasn’t even allowed to see her, and nobody wanted to talk about it. It was a complete nightmare – something I never anticipated – ever. Finally, when I was about to become combustible with frustration, I told them I refused to leave my room until I got some answers, and I threatened to pass out from emotional distress.”
Nell’s ranting, raving, and extreme behavior finally got results. Though her pediatrician and obstetrician seemed to completely desert her, ultimately, the hospital summoned a geneticist. He was not certain, but his best guess was Goldenhar Syndrome, but Lindsey presented with so many other symptoms that just did not make sense. Goldenhar Syndrome is a congenital birth defect, which manifests itself as deformities of the face. It usually affects one side of the face only. Common characteristics include a partially formed or totally absent ear with the chin positioned closer to the affected ear. One corner of the mouth is typically higher than the other, and there may be benign growth of the eye or a missing eye – as in Lindsey’s case. Goldenhar is also known as Oculoauicular Dysplasia or OAV. Doctors are uncertain why Goldenhar occurs. However, they do not believe it is the result of anything the mother did while she was pregnant. Environmental factors may play a part.
He gave a list of the top five treatment facilities and surgeons in the country. Dr. Salyer was on the list, but we went with the New York team for no particular reason. They confirmed the Goldenhar diagnosis, but after more than 60 surgeries and procedures, we never achieved the results we expected. After one particularly complex, sixteen-hour, reconstructive surgery, Nell claims the doctor “forgot to wire shut a critical area,” so Lindsey required tan additional surgery just days later to alleviate a raging infection. According to Nell, the physician’s response was “It’s a jungle in that kind of surgery. You really should not expect too much.”
Infuriated by the cavalier, patronizing attitude had perceived and not willing to accept a mediocre outcome for her daughter, Nell Gozdowski continued her valiant quest for a physician who would exude the confidence and sense of expertise she sought. Lindsey and her family struggled constantly with the symptoms and frailties associated with her peculiar condition. They still felt no one really knew exactly how to make Lindsey better. In addition to the excruciating deformities Lindsey endured, she also suffered from a full range of allergies, asthma, acid reflux and sleep apnea. She had more mobility on her right side but could not actually feel both sides of her mouth.
Due to her lack of facial control, Lindsey’s sleep apnea worsened. She would stop breathing completely during the night – then vomit all over herself as she gasped for air and her respiration revived. To help her breathe more consistently throughout the night, Nell tells of holding up Lindsey’s chin to keep her mouth closed while she slept all night long. Though this helped alleviate the problem, Nell was utterly exhausted during the day and could barely function – until one night Nell never forgot.
“I have always had a strong faith, but my experiences with my dear Lindsey have deepened my spirituality and belief beyond what I could have ever imagined,” she explains. “One night when she was just four years old, I was sitting close to her, cuddling her with one arm and holding up her chin with the other as Lindsey drifted off to sleep. She had to remain upright, in a seated or even standing position to sleep to enable her to breathe and lessen the impact of post-surgical drainage I some cases. As the darkness began to completely shroud the sky one evening after a long day, Lindsey spoke very deliberately, “Mommy, you don’t have to hold my chin up all night. The King is with me. He is watching over me, so it will be alright.”
“I gasped and was utterly stunned when I heard her words of wisdom beyond her years,” Nell remembers. “She’s just a baby. How can she be speaking such words of faith?”
But Nell’s sense of peace was restored immediately as a result of her daughter’s prophetic message. She knew at that moment of Grace that Lindsey and her health were in God’s hands. “I understood in that instant that I cannot do everything for my daughter. It’s not possible. It was as if I could breathe again – at a time when I was trying so hard to help her take in that next breath of air. Oh, what an amazing gift she had given me.”
These are the treasured moments help Nell cope and literally helped me stay the course. Still, she and all who meet Lindsey fell there is something extra special, almost magical about Lindsey – a precious gift God has given her to help her along this remarkable journey.”
“Actually that’s gifts – plural,” confides Nell. “Lindsey is incredibly outgoing and has been as long as I can remember. Her personality is effervescent at times and her scrappy sense of humor really seems to attract people. She has never shied away from coming face to face with others and has never felt inferior in any way. She says exactly we she thinks and is sincerely comfortable with herself.”
We can certainly heed the life lesson we learn from Lindsey – the irony of teenage girl living with unattractive, uncomfortable facial deformities – feeling comfortable and truly happy with herself, regardless of her appearance.
“Lindsey’s grades are fine and she holds her own in school, but we can probably attribute some this strong sense of self to what I call her productive alliance with Dr. Salyer, Nell observes. “Thank God we contacted him. In addition to orchestrating her physical transformation, still underway, something about him has made a big difference in her – particularly in school,” she postulates. “I remember when he said, ‘someday you are going to make something of yourself, and it’s going to be big,’ she beamed with delight.”
Since that conversation at age nine, Lindsey has become intensely interested in science and math. “I am going to need it to become a doctor,” she says. She has even asked our pediatrician if she could shadow him.
“What is remarkable about Dr. Salyer is the genuine, personal interest he takes in each of his patients and families,” Nell says. “If I could make one wish for any other mother going through this overwhelming process of trying to find a wayl to heal her child, I would wish for her – a surgeon like Dr. Salyer, who would truly listen to her and engage with not only the affliction – but the whole person.”
Each day, Nell says a prayer of gratitude when she sees her 13-year-old daughter pause to catch a glance of herself in the hallway mirror. She does not turn away or react in distress, but she always gives herself a great, big smile and asks with a chirp, “Hey, how do I look?”
