A is for Ataxia-Telangiectasia All-Stars.
Anyone know what Ataxia-Telangiectasia is? It’s a rare genetic childhood disease that blends the worst symptoms of cystic fibrosis, muscular dystrophy, immunodeficiency, and even cancer. Statistically, many children with A-T tend to lose their ability to walk by their teen years and must depend upon wheelchairs for mobility.
Too many do not survive into their 20s.
Yes, Ataxia-Telangiectasia is that serious.
And, so far, A-T is incurable.
But folks like country music star Brad Paisley and actors Ben Affleck and Jennifer Garner are helping to raise awareness and research funds to beat this dreadful disease.
Brad Paisley wrote a song, titled “Hard Life” and released in November 2011, for his friend Joe Kindregan. The 25-year-old Virginian has A-T. Downloads of “Hard Life” benefit the A-T Children’s Project.
Consider the chorus of Brad Paisley’s “Hard Life”:
Yeah, it’s a hard life,
But I’m okay.
If I didn’t have this, I wouldn’t be who I am today.
And I have lots of friends –Oh, and I have love.
And yeah, I have a hard life but in some ways everybody does.
Perhaps those words speak to anyone living with an incurable illness, a physical challenge, or another chronic condition.
I salute Brad Paisley for standing up for A-T. That makes him an A-T All-Star for families like ours. We have a little girl in our extended family with A-T. Maybe you know someone dealing with it as well.
Daily, I pray that the child we love (pictured here), who faces A-T personally, continues to stand strong. We’re asking God to help her beat the odds.
She’s our Ataxia-Telangiectasia All-Star.
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