Adam Sachs's 11-year-old son has inspired him to climb a mountain. In Africa.
The Brookeville father of three and his sister will fly to Tanzania next week and spend eight days hiking Mount Kilimanjaro to draw attention -- and dollars -- to help fight a degenerative genetic disease that afflicts his son, Justin, and fewer than 400 other known patients around the world.
The disease, familial dysautonomia, affects a tiny population of Ashkenazi Jews -- Jews of Eastern European descent. It wreaks havoc on the autonomic and sensory nervous systems, causing irregularities in blood pressure and body temperature, weakened motor skills and developmental delays. Children also are susceptible to severe respiratory problems because of misdirected swallowing.
"Justin himself has been climbing a mountain his whole life, so why shouldn't I climb a mountain for him?" said Sachs, 40. So he and his sister, Pamela Clack, of San Diego, decided to climb Mount Kilimanjaro, the tallest free-standing mountain in the world, after learning they didn't need any special experience or equipment.
The disease was diagnosed in Justin when he was 2. He started speaking at age 6. Though he can't run or exercise and is fed mostly through a tube, he is independently mobile. He has had some developmental delays but is a bright child, with an almost adult sense of humor, said his mother, Stacey Sachs.
Because such a small number of people have the disease, it is difficult to shore up research dollars and support for a cure, Adam Sachs said.
"That leaves it up to us, the parents, to try to do what we can for our children," Sachs said. Justin has been hospitalized several times this year, his father said. "It's been a rough year."
By all accounts, the family's campaign has raised awareness. So far, the climb for Justin has raised $29,000 of the $100,000 goal.
Justin will attend sixth grade at Rosa Parks Middle School in Olney this fall. His parents say he is extremely sensitive and cares deeply about others.
"He is an incredibly good-natured kid," his mother said.
And he is like many other 11-year-olds: He likes to play video games and watch television.
His two favorite songs are Bill Withers's "Lean on Me" and "Tubthumping" by Chumbawamba. It's the refrain, "I get knocked down, but I get up again/You're never going to keep me down," that he likes most, his father says.
Adam Sachs said that when he gets to the top of the mountain, he will plant a flag in Justin's honor, take some pictures and call his son from a satellite phone.
For his part, Justin is grateful for what his father is doing.
"I feel proud," he said.
For more information on familial dysautonomia and the Sachs climb, visit www.familialdysautonomia.org/Sachs/climb-for-FD.htm.