Sam and Zach
Caring Bridge Page Dedicated to Sam and Zach

Hosted by the Rehoboth Beach Writers’ Guild, a 501 c (3) association, "Writers at the Beach: Pure Sea Glass" was founded in 2005 to raise money for, and awareness of, a little known disease that affects as many as 1 in 2000 children. Mitochondrial disease.

At our inaugural conference in March 2005 we hung posters throughout the conference facility with pictures of children and teens all of whom had this disease. "The Faces of Mitochondrial Disease" the poster said at the top. Over twenty children were shown, posing at Disney world, arms outstretched and standing in front of a lake, sitting before a Christmas tree, hugging a teddy bear. All were smiling, laughing, living.

Over half of those children have since died.
Two of them are my nephews, Sam and Zachary.

Still, why a writers’ conference?

Because unless this story gets told—and heard—the money for a cure will never be raised. Because we all have stories like this that need to get told for whatever reason. "Writers at the Beach" is about helping others to tell their stories.

In the last three years, thanks to the writers, agents, editors, publishers and songwriters who VOLUNTEER their time to this event, thanks to the web-designers and photographers, to Celia Pearson, whose sea glass images we use each year, our local restaurants who help make the author dinners possible, the local and national companies who donate products, and the many many participants who donate an extra ten or fifty or one hundred dollars to this event, "Writers at the Beach:Pure Sea Glass" has donated over $35,000 dollars to the United Mitochondrial Disease Foundation in honor of Sam and Zach Juhlman.

In addition to raising money for mitochondrial disease, "Writers at the Beach" is Delaware’s largest writing conference, bringing to Rehoboth nationally-known writers from across the US, as well as participants from nearly two-dozen states. In addition to what the authors do for the conference, they also volunteer to go into our local schools, offer free workshops for young writers, and serve as judges in our annual Young Writers Contest. Through the P.A.L.s scholarship (awarded in celebration of Peter and Andrew Lubelcyk, two brothers who also suffer from mitochondrial disease)"Writers at the Beach" allows two local writers who are dealing with some kind of illness and/or disability in their family and who, for financial reasons, would otherwise be unable to attend this event, to participate in the full conference weekend.

Below is an excerpt from my sister, Anne’s online journal, that tells a small fragment of Zach and Sam’s story (written before Zach died).

SAM and ZACH's STORY
Anne Juhlmann (Sam and Zachary's Mom)

There is a land of the living
And a land of the dead
And the bridge is love
The only survival
The only true meaning
Thornton Wilder, The Bridge of San Luis Rey

Sam was seven years old, nine months, and twenty-one days old when he died suddenly on March 3, 2005 from Mitochondrial Disease. He was a child with big brown eyes, who was tiny for his age, though his presence was enormous. He loved to tell jokes - none of which were funny. Yet to hear his uninhibited laughter at his own jokes was to step into the sunshine from the shadow, and so we asked him to tell the jokes again and again.

At night Sam used to ask me, Sam's mom, to climb into bed with him and about thirty stuffed dogs. I would lay beside my little boy while he told me he wanted to be the Yellow Power Ranger for Halloween and how he couldn't wait to go to school so that he could have recess "just like the other kids," and that when he grew up he would be Buzz Light Year or maybe an ambulance. "You mean an ambulance driver?" I once made the mistake of asking. "No," he said with disgust. "Don't you know about an ambulance? It goes really speedy and it helps people get better. That's what I want to be."

Zachary and Sam were "best brothers." Sam adored Zachary, wanted to be just like him. And no wonder. Zachary was so good, so patient with his brother. Zachary is a teenager now (14), a creative, computer-savy boy who loves jokes and card tricks and beating most of his family at chess.

Outside Zach does wheelies in his electronic wheelchair and catches worms to scare his sisters with. He looks forward to April Fool's day - peanut butter on our door knobs, fake spiders in our dinner, switched cereal in the boxes. I am told and I have seen that this disease is progressive for Zachary, but it's pretty hard to reconcile progressive with a kid that is so alive.

Mitochondrial Disease is, at heart, a disease of energy deficiency. The mitochondria, tiny organelles living inside our cells, are responsible for converting food and oxygen into energy. When the cells can't get enough energy, due to malfunctioning mitochondria, the cells begin to die, and the organs in which these cells live-the liver and kidneys and eyes and digestive system; the brain, the heart-begin to fail. Miotchondrial disease is no single disease, in other words. It can affect any organ, appear as any disease, it is progressive, and it has no cure.

Not yet.

LINKS:

United Mitochondrial Disease Foundation