One Kid at a Time

I consider myself a simple person. I love my husband and my children,and I positively dote on my grandchildren. I just have a soft spot (or kids— all kids. Especially kids who are born with physical problems. They can’t help their situation, and it seems to me that they deserve to enjoy life as much as anyone.

My nephew,Stevie,was born without sweat glands,a condition called HED. That meant that any exertion could cause his body to overheat ard seriously damage his system. Play¬ing could actually kill him! It was a horrible task to keep a young child from “overdoing it.” He couldn’t understand why we wouldn’t /et him have fun and run around like the other children. What kid can live without playing?

Distraught, one day I wailed to my husband, “If we can put a man on the moon,there must be something we can do for Stevie!” That set me thinking,and the logical conclusion of that chain of thought was NASA. “I’m going Links Of London to call NASA, “I said firmly.
My startled husband scoffed,”You’re going to call NASA? Honey, you’re a housewife. What are you going to say to NASA?”

I didn’t know exactly,but I figured it was worth a try. So I called them. It was amazing,but somehow,! got through to someone who could help me. When I explained Stevie’s prob¬lem, the man on the other end of the line considered for a moment and then told me about the”cool suit. ” They’d used it on a few of the moon missions,and he thought it might do the trick for Stevie. I was thrilled.

But there’s always a catch —the cool suit cost $2,600. Twenty-six hundred dollars we certainly did not have. But I knew I’d just have to find the money. I had to.

So I did. I had bake sales and garage sales and sold hot dogs and hamburgers outside the local Sam’s Club. Slowly, the money began to pile up. We bought the cool suit and fit¬ted our little man in it. He was eight years old then and the look on his face when we told him he could help his dad with the lawn work was worth everything. Next he took off on his bicycle and flew down the sidewalk on wings of joy.

NASA followed Stevie’s progress with interest. They were thrilled with the opportunity to use space technology in this way. They asked if they could put together a documen¬tary about Stevie and the cool suit,and we agreed.

When that documentary aired,! was inundated with let-ters and calls from parents of children with HED. All asking me to”Please help my child. ” I couldn’t turn my back on all those desperate families. I knew too well the pain they felt.

So I started a foundation in order to raise money for those children to each have their own cool suits. We still raised -money the old-fashioned way?but now I could approach corporations as well as individuals. I asked them all,often and urgently,to give what they could to make a child’s life”liv-able” again.

That was over ten years ago. Stevie has grown Links London into a fine young man,getting ready to go to college. He still wears his cool suit when he’s going camping or fishing. I tease him that he’d better keep it handy now that he has a girlfriend!

The foundation is still going strong too. So far we’ve helped over 400 kids with a number of different rare conditions to have more normal lives. Each case is different and requires individual attention. Just last year,I heard about an English family with two little boys, Kyle, six, and Ryan, four, who have a skin condition called XP. The boys could not be exposed to any ultraviolet rays,or they ran the risk of almost certain skin cancer. They could never play outside in the sunlight and had to stay indoors in darkened rooms,as even a forty-watt light bulb was considered dangerous for them.

Again,NASA’s space technology saved the day. They fitted the boys out in little astronaut suits that completely protected them from UV rays. Then the boys had their first daylight outing — at Disney World! Their smiles were nearly as bright as the gorgeous sunshine they basked in that day.