Lincoln Times-News - Children's Miracle Network Sends Local Family to Washington

News Article

By Matt Chapman

Katie Webb, a Lincoln County native born with a rare disease, was recently honored as the 2016-17 Children's Miracle Network Hospitals Champion Ambassador for North Carolina. As part of the ambassador's tour, Katie and her family visited the nation's capitol, where they met Sen. Thom Tillis. They will soon take a trip to Disney World in Orlando, Florida.

"She's a very sweet and vibrant little girl," Tillis said. "Obviously she has a very rare disease. I think at first when I approached her I probably scared her, but when I got down to her level and sat on the steps she was as sweet as she could be. We took a selfie. She loved that because she loves pictures. I've got it on my phone."

Katie was born with a cleft palate, as well as a rare genetic disorder that affects the pituitary gland. At the time of her birth, she was only the fourth documented person in the world to be diagnosed with the disorder.

"Her pituitary gland does not function. That is like trying to operate a computer without the power," Katie's mother, Leigh Ann Webb, said. "It tells her brain to tell her body how to function. Her adrenal, heart rate, blood pressure, blood sugar, thyroid, growth, all of those hormones. It normally would send direction to her brain to make those things function. Hers does not function so we medically treat her."

Katie was placed on life support as soon as she was born and spent more than 100 days of her first year at Levine Children's Hospital in Charlotte. She has undergone four major surgeries and numerous hospitalizations, but has surpassed any initial boundaries her doctor felt might limit her.

"Levine Children's Hospital was named one of the top children's hospitals in the country and it truly is a wonderful place," Leigh Ann Webb said. "Because of their life saving measures they were able to help us maintain Katie's life. She lives a wonderful life because of the equipment, and the people and the care that she received at Levine."

Tillis has a unique connection to Katie and the Levine Children's Hospital. Tillis's daughter finished her final clinicals at the children's hospital and was offered a job upon completion. He believes that when she starts work in a couple of weeks that she'll be placed on the same floor as the infants and toddlers where Katie has spent countless days throughout her lifetime.

"I was telling Katie's parents as a matter of public policy we need to do more to encourage nonprofits like the Children's Miracle Network while we continue to invest in the national institutes of health and try and find cures for diseases," Tillis said. "The more that we accelerate the cures for cancer, Alzheimer's and autism, that frees up the resources to go after the rarer diseases. With the advances in genetics and medical research, the pace of finding a cure for things that 10 or 15 years ago would have been a death sentence is accelerating at an amazing rate."

Katie and her family spent a week in Washington, D.C. making memories that will last forever. They explored the numerous museums in the city, took the field before a Washington Nationals game and met both United States senators from North Carolina.

"Thom Tillis was fantastic," Leigh Ann Webb said. "He was so kind and very, very sweet. In fact, he took selfies with Katie, which I thought was the coolest thing ever. It was really neat. He seems very personable and very kind and showed compassion for our kids that do need that medical care like Katie."

Katie is now back in North Carolina getting set for her fourth annual Christmas in July toy drive. All proceeds, toys or cash, go to the Levine Children's Hospital to help kids that are currently facing the hardest days of their lives. Anyone interested in helping Katie with her Christmas in July can find more information on her Facebook page, "Katie's Thousands," or by reaching out to Leigh Ann Webb via text at (704) 308-6970.

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