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Boy with uncommon courage loses ‘halo’ bolted to his head, gains hope

By Genaro Molina, Los Angeles Times

In our line of work as photojournalists we might witness tragedy, triumph, joy and misery all in the same day. There has been no shortage of this in my 30-plus years in journalism.

We are often in the front row to witness history. I have documented the effect of AIDS in Africa, the aftermath of Hurricane Katrina, the homeless of skid row, the life of Pope John Paul II at the Vatican to name a few memorable assignments.

But sometimes we encounter great courage and inspiration in the corners of a quieter story.

That was the case with 11-year-old James Weatherwax, an Alaskan boy suffering from the genetic disorder Apert syndrome, which left him with a dome-like shaped head, fused fingers and toes, a cleft palette and numerous other maladies.

When I met James he was preparing for his latest surgery to remove the halo-like apparatus that had been bolted to his skull. He had already been operated on more than a dozen times.

The first part of my story was to document everyday life for James in the rural town of Klawock, Alaska, population 780. The second part included an 18-hour journey to Seattle, where he would undergo surgery to have the device removed.

After meeting James, his mother Kecia and grandfather Jim Williams, I followed the boy as he went about his day exploring the town with friends and sister in tow. People would greet James with a friendly “Hello,” or a nonchalant wave of the hand.  What struck me was that people took very little notice of the halo and James paid no heed to it either.

The next evening a procession of cars honored Klawock High School’s varsity basketball team, which had returned after winning the state championship. I watched as James cheered and waved his arms with great joy and abandon while riding in the back of his grandfather’s truck. A rally was held in the high school gym and James applauded the team with hands that had fused fingers before two successful surgeries.

While attending Sunday school, James played games with fellow students who, for the most part, paid little attention to the halo or pair of tusks that hung from his upper palette. All but one, that is. “Is that thing bolted to your head?” a youngster asked James. “Yep. But it doesn’t hurt.”  “Did it hurt when they put it on?” she continued. “Super bad,” James replied.

As photojournalists we try to be like a fly on the wall, to find quiet moments that capture the character of a story while remaining objective. But we are human beings and can’t help but notice little things that add up to impress.

The subtle stoicism of this child was admirable.

The trip to Seattle started at 5 a.m. and involved an hour’s drive to Hollis, Alaska, to catch a 3 1/2-hour ferry ride to Ketchikan. Then came a flight to Seattle, a tram and finally a car ride to a hotel.

James took the whole trip in stride.

Occasionally travelers would subtly glance at James trying to assess the strange visor attached to his head. The alarm that kept going off as he tried to pass through security at the airport did little to rattle the youngster.

James would make several visits to Seattle Children’s Hospital before the day of the operation. Dr. Richard Hopper, James’ surgeon and head of the craniofacial surgical team at the hospital, tried to reassure James that the procedure would not be as invasive as when the halo was attached.

But on the day of the surgery, James’ tears were hard to hold back. While on the gurney in the operating room he tearfully shouted, “I want my grandfather!” Remembering his grandfather was back at home, James shouted, “I want Genaro!”  The medical personnel looked in my direction. My heart sank. I reassured James that I was one of the individuals in surgical attire and that I was there with him.

There comes a point in many stories where you make a certain connection with the subject, and it doesn’t get any more dramatic than this. How could I not root for this kid?

In the post-op room, James was slowly coming around as his mother and nurse looked on. He reached up to check for the halo and, discovering it was no longer attached, gave an amazing expression of surprise. “It’s gone,” said the nurse.

It was a one in a million moment in which the story reached its zenith.

I’ve been privileged to observe and record many similar moments throughout my career as a photojournalist, and each one continues to inspire and enlighten me.

I never know where or when life lessons will be found. But if I continue to look hard and with an open heart, sometimes they can be found in the smallest of packages.

See more work by Molina

Read the story by Kim Murphy: “Alaska offers hope for a stricken son

2 Comments

  1. August 2, 2013, 1:16 pm

    Thank you for bringing to us stories like this. Now only if some TV stations would pick up short clips like this and play it once a day. Just one story per day. A different story everyday. Then, may be we will see how lucky we are to be born in as good a shape we all did.

    By: Dave
  2. August 2, 2013, 3:15 pm

    That is wonderful! How you made a difference on James life, at that moment when he was probably afraid of what he was going through…. and you were there with him! I am sure God will Bless you for that and again, your parents as good hearted as there were, are smiling from up there seeing you spread kindness while you work! Good job dear Genaro!

    By: aruizmont@gmail.com

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