Hero: a remarkably brave man (or woman); superman; champion; conqueror; defeater (for our purposes we will state this as being Jesus Christ); somebody admired.

In this ongoing series, where I introduce to you someone I know or have met, for the sake of avoiding controversy, a ‘hero’ will fit the definition above and by common sense be nothing more than human,  but an extraordinary one at that.

The first hero I brought you through this blog was my daughter – how she gives 24/7 to homeless and seriously abused children and her joys and sorrows through this place God has called her.

The second hero(es) I introduced you to, were Tim and Suzanne (click to read the story if you missed it).  They offer foster care to babies and through their selfless service (like so many others we probably couldn’t name them all), have adopted one of their little ones that they’ve cared for, almost since birth.

The third hero I brought you was Tom Davis.  Tom leads CHILDREN’S HOPECHEST, a mission organization bringing God’s hope and love to orphans around the world.

Everyone has someone(s) in their life they admire.  One could say we even look up to them, however I strongly feel the only one we should be ‘looking up’ to is Christ, otherwise we may easily, though unconsciously, place the others we tend to look up to upon a pedestal.  That’s a recipe for disaster and disappointment.

And with that said, there is another person I want to introduce you to that I met last week.  His name is Will.

Will and his wife had a little boy four years ago, born with an autoimmune disease called AT, short for ataxia-telangiectasia (pronounced ‘ay-tack-see-us the-lan-jick-tay-sha’ – or AT for short).  I had never heard of this one, but Will explained that simply put, it, like so many other autoimmune diseases, falls under the category of a movement disorder and the children have involuntary movements.  The complete definition is, “…a progressive, degenerative disease that affects a startling variety of body systems. Children with A-T appear normal at birth, and the first signs of the disease usually appear during the second year of life. These first signs are usually a “wobbly” lack of balance and slurred speech caused by “ataxia,” which means a lack of muscle control.”[1]

Looking at this cute, little four-year old boy, you could see he was struggling with muscle control.  To me (one who has a movement disorder), his movements were similar to one who may suffer from advancing Parkinson’s disease (my movement disorder). His limbs were slightly spastic and there was some twitching of head and face movements.

Will and his wife were told their son was one of about approximately 800 kids in the United States that have A-T.  Epidemiologists estimate the frequency of A-T as 1 in 40,000 births, but many go undiagnosed.

The prognosis of A-T?  The A-T Children’s Project says that, “A-T is presently incurable and unrelenting. If they are lucky enough not to develop cancer, most A-T children are dependent on wheelchairs by the age of ten, not because their muscles are too weak, but because they cannot control them. Later, A-T patients usually die from respiratory failure or cancer by their teens or early twenties. A few A-T patients live into their forties, but they are extremely rare.”

I sat there, listening to Will talk about his son and watched his son having lunch with his dad.  There they sat, father and son, at the counter in a Mexican restaurant, enjoying a burrito together.  In addition, Will made the statement that most kids with A-T don’t live past the age of ten.

I don’t know about you, but that would crush me as a parent.  I’m sure in many ways that the knowledge of knowing your child will die by a specific time crushes Will and his wife, as well.  However, on that beautiful, sunny, Kentucky day, Will didn’t appear crushed, but rather, enjoying the time with his beautiful, four year old son.

I was told that he and his wife had just had another baby – a girl this time, two months old.  With the occurrence of A-T being 3 in one million, the chances of two siblings having this disease is rare.  However, since both parents have to carry the specific genes for this disease to surface, the occurrences rises to one in four children birthed by the same set of parents.  So, needless to say, their daughter fell into the one in four statistic and they have two children who both suffer from A-T.

Life can be hard and then you meet someone like Will and feel like your issues and problems are miniscule.

There was an obvious camaraderie between father and son and that’s something I love to watch – dads with their kids.  I can’t imagine being a parent of a child, knowing what could possibly be ahead of me like Will does.  But for now, he is loving being a dad to this little boy and I’m sure he is with his daughter, as well.

There’s not a whole lot I can do but pray for them.  There is an event/fundraiser for A-T coming up – a marathon to raise awareness and money for this disease.  Will has never run a marathon, but is doing it for his kids.  If you’d like more information or would like to sponsor Will in his run for a cure, let me know and when I receive more information, I’ll pass it on.

Meanwhile, please pray for this dad, his wife, and their kids.  Life can be hard and often cruel, but if we choose to take one day at a time (sometimes one second at a time), and trust God that He will come through for us, it makes it a little more bearable.

To read about another dad who’s making a difference, go to A-T  FEAT Documentary and see how you can help or for more information on A-T disease.