Waterloo boy with fatal disease honored by Canadian National Rai - KWWL - Eastern Iowa Breaking News, Weather, Closings

Waterloo boy with fatal disease honored by Canadian National Railway

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All aboard for a special day honoring a 9-year-old boy battling a rare and fatal disease.

Today, the Canadian National Railway (CN)  hosted a day just for Jaxton Engstrom of Waterloo. The Lou Henry Elementary student is fighting Batten Disease, an inherited and fatal disease of the nervous system.

Thomas Lobello of CN said, "I went online and read about Jaxton's journey and felt inspired. We wanted to give back, something to make a difference to enrich his life a little bit."

It all started with an idea from Jaxton's teacher Jessica Stakey. She takes him on different adventures, but this time his classmates got to join in.

She said, "We are giving him those experiences that he may not be able to have later in life."

Each day is different with Batten Disease. It has fully taken his vision and it will eventually take his life. His family has learned to live each day to the fullest.

Tina Engstrom said, "People ask if you could take a Make A Wish trip, where would you go? I think about it a lot... and this is it. Jaxton would want to be where he could feel what he can't see, so this is an opportunity to go feel, touch and be accepted."

To make it even more special, the railway officially named a control point in Jaxton's honor. 

Lobello said, "It's an honor we bestow upon individuals who we find are significant in the community. It's something that can be known for pretty much the rest of time."

Even though Jaxton can't see it, he can feel it. 

Tina said, "It's that perfect moment and we will forever have it."

To end the day, CN surprised Jaxton and his family with a special adaptive trike that he had been waiting for. Several weeks ago, his classroom teacher and the school Physical Therapist approached the I HOPE Chapter of AMBUCS, a non-profit organization that provides adaptive trikes for people who cannot ride a two-wheeled bike about getting a trike that Jaxton could ride. When the CN railroad heard about the adaptive trike, they decided to fund the trike.

If you want to learn more about Jaxton's story, his family has a Facebook page called "Jaxton's Journey".     

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