Grand County Teen Shares Story of Overcoming Odds

Timothy Rau Has Rare Disorder, Living Full Life

The story of 16-year-old Timothy Rau is one that inspires many. Those who know him say he's one of the most active teens at Middle Park High School. He's also a student who often gets straight As.

"I just want to be like a normal teenager and don't want to have that much special treatment," said Rau. That even includes getting his driver's permit.

But, Timothy is very unique. Hidden behind a contagious smile is a boy struggling every day to make the most of his situation.

Tim was born with ataxia telangiectasia, or A.T., a rare neurological disorder that is slowly causing part of his brain to deteriorate. There is no cure for A.T., and it's noticeably affecting Tim's ability to walk and speak. He uses a walker and hand rails to walk at home, but school days are spent getting around in a wheelchair.

Tim's parents will tell you nothing stops him. He's always got a positive outlook.

"Living with A.T. is like any lifestyle. It has its benefits and disadvantages," said Timothy Rau.

He considers tremors and slower speech to be a nuisance, that's all. For him, an advantage to having A.T. is the ability to participate in disabled sporting activities.

"For example, this past year I started doing the snow bike at Winter Park Resort," said Timothy.

One look at the walls in the Rau family's home will show you that Timothy's a big fan of all outdoor activities. There are photos of him snowmobiling, white water rafting, hiking and participating in Alaska's Iditarod though the Make A Wish Foundation.

"He's taught me that if you get a disease that is going to slow you down and you can't do everything you want, at least you have to keep a good attitude and keep going. Do what you can. Don't let it stop you," said Charlie Rau, Timothy's dad. He says they first noticed something different about Timothy's development when he was just two years old.

It would be years before Timothy's condition was understood.

When he was 10, they finally got the diagnosis of ataxia telangiectasia. Dr. Julie Parsons is a neurologist at The Children's Hospital in Aurora and the doctor who is now helping Timothy. Over the past six years, she's witnessed the progression of Timothy's disorder but also his determination to make the most of every day.

"It is, in truth, a progressive neurological disorder that we don't have a cure for and that's a frustration. Its very difficult to see patients who have those kinds of diseases and problems. But, Tim has just been such an inspiration to me each time I see him. It's a joy to be able to talk to him and see how he's doing," said Parsons after Timothy's recent checkup.

The harsh reality is that many children with A.T. will not live past their early 20s.

Timothy and his family believe he's on a path to beat those odds. For him, a positive attitude and the willingness to try new therapies are making a difference.

His parents are doing all they can to make sure Timothy is physically fit and getting the necessary nutrition for his body's needs. These are discoveries that may help other children with A.T.

"Maybe we can help the other families out there to learn that you can do anything, you just have to put a little thought behind it," said Diana Lynn Rau, Timothy's mom.

"You can do anything you want to do. Never give up," said Timothy.

To learn more about this neurological disorder, visit Ataxia Telangiectasia.

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