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A Family’s Journey with Cystic Fibrosis

A child’s illness will often mean a journey for the entire family. Years of treatment, setbacks and triumphs will mark this journey. And sometimes, the journey is also marked by thousands of miles of travel. For Kyle Lane and his family, the journey has lasted more than 16 years and has taken them from New Jersey to Florida to North Carolina. And, it has affected not only Kyle, but also his parents, Jeff and Tracey, older brother Tyler and younger sister Chelsie.

Kyle was diagnosed with Cystic Fibrosis at the age of 4½ months. Now 16, “Kyle is an amazing teenager who has a great outlook on life,” say his parents Tracey & Jeff.

During the first few years of his life, there were frequent doctor’s appointments, healthcare treatments, even hospital stays. At age 5, Kyle contracted a bacterial pathogen that compromised his quality of life significantly. The family remained in New Jersey for several years but when Kyle turned ten, they decided to move to Florida in the hopes that the warmer climate might help.

When Kyle turned fourteen, things became even more difficult. “He had to spend five weeks at ALL Children’s Hospital in St. Petersburg, and things were touch and go for awhile,” says his mom Tracey. His pulmonary function decreased drastically and he lost more than 30 lbs. The future outlook for Kyle’s lung functioning was so gloomy, doctors referred him to North Carolina Children’s Hospital to be evaluated for a double lung transplant.

“We’ve made several trips from Florida to Chapel Hill since we first saw doctors here in September 2008. Travel and lodging expenses have put a huge strain on our family,” says Tracey. In June of 2010, Kyle and his mom, relocated to Chapel Hill to be close to the hospital as they waited for the lung transplant.

It was during this visit that they stayed at the Ronald McDonald House of Chapel Hill. “Knowing that there was a safe, affordable place to stay made the waiting for a suitable donor easier for our entire family,” says Tracey. “Kyle enjoyed and looked forward to the Tuesday night arts and crafts, and loved seeing the dogs around the house. We have four dogs at home, and consider them family members, so the dogs here really reminded him of being at home with them,” she adds.

On July 5th, Kyle received the new set of lungs he needed so desperately. “He’s had some minor complications, but nothing that will hold him back. As parents, we wish we had the courage that Kyle has,” says his dad, Jeff. “He’s never asked ‘Why me?’ He just keeps on fighting no matter what comes his way.”

To pass the time in the hospital, Kyle loves to build things with LEGO® blocks. His mom tells us that his fixation with them started pretty young. “The baby wipes we purchased came in primary LEGO-style blocks. He would stack them, and as he got older we kept buying him sets appropriate for his age. It was something he could do wherever he went.” Rumor has it that he’s working on an entire airport during this hospital stay!

“The Ronald McDonald House has been a great place of comfort,” says Tracey. “It can be scary to be far away from home, but there is always a smiling, familiar face at the Ronald McDonald House. They are always willing to help. They make the tough times easier, and the hard times brighter.”