Christopher Barker is everything you’d expect in a 3-year-old. He’s happy, loud, and full of life, so it was a devastating shock to hear that he had a fatal disease, reported Kat Russell in the Stamford Advocate.
Christopher suffers from ataxia-telangiectasia, a rare genetic disorder that appears in children, promoting a weak immune system and deterioration of muscle. While his life expectancy is short, his family promises to deliver a life full of endless adventure.
Ataxia-telangiectasia or AT, affects about 400 people in the United States. Most patients don’t live passed their mid-twenties, and many are disabled and confined to wheelchairs by the age of 10.
When the Barker family had Christopher, he was deemed perfect. Upon birth he passed tests with flying colors and was really strong in every which way. While they quickly learned something neurologically was wrong, it took several months before they came across the appropriate diagnosis. Once they learned of his AT, they didn’t know anything besides the fact he couldn’t get sick or he could die. It was terrifying for the Barker family.
The Barker family had to educate themselves and prepare for what their future would look like with and without Christopher. They would learn his life wouldn’t be long and he would start losing all physical functionality over time. Many AT patients are also more likely to develop cancers, so they had to be aware of those risks as well.
While they don’t expect a happy ending to his story, that doesn’t mean they aren’t going to give him the greatest life while he has it. The Barkers said they want every day for him to be “a party”. They’ve learned to live for the moment, embrace adventure and go out see things. Experiencing the world around them and the beauty that is there together is such a wonderful thing.
