By Cindy Mindell ~
STAMFORD – Four years ago, Jillian Katz, who was then 13 years of age, climbed Mount Kilimanjaro and raised $40,000 for the International Rett Syndrome Foundation (IRSF).
The “Climb for a Cure” was not only part of Jillian’s bat-mitzvah process: the Katz family had long been committed to IRSF and its work, and is still involved today.
A neurological disorder that occurs mostly in girls, Rett Syndrome seriously impairs speech, mobility, sensory sensation, autonomic function, and cognitive learning.
The Katz’ first became aware of Rett Syndrome through family friends Sean and Lisa Lebson, parents of Jessie, now 14. Diagnosed at age two with the disease, Jessie cannot talk, feed herself, or walk independently. “She has no way of communicating, but there is someone inside there,” says Jillian. “To me, that was really striking, especially at a young age, and I decided to dedicate my climb to her as a way to combine my love of the outdoors and my passion to help people with Rett Syndrome.
Last month, Jillian scaled the peak again, this time in support of her two younger sisters, Abigail (Abby), 15, and Victoria (Tori), 13, who had organized “Climb for a Cure 2.”
It was the girls’ uncle, Noah Katz, who first inspired the idea when he offered to take each of them and their younger brother on a trip of their choice as a bat- or bar-mitzvah gift. Katz himself is a mountaineer and was committed to climbing the Seven Summits, the highest mountains on each of the seven continents. In 2008, he was planning to climb his fifth, Mount Kilimanjaro, the highest peak in Africa.
When Jillian decided to join Noah on the climb, her mother, Laura Katz, signed on as well. “But we had to make it not just about ourselves, so we decided to do something for a charity,” Laura says. “Ever since our kids were little, Rett Syndrome has been our family commitment and we have always supported Lisa and Sean; we’ve always donated and participated in fundraisers. All three girls talked about the disease and their involvement in their bat-mitzvah speeches at Temple Sinai [Stamford]. That’s the conversation that always comes up in our family.”
On both climbs, the Katzs were led by technical advisor Marty Schmidt of New Zealand, the guide Noah Katz has worked with for 15 years.
“The first climb was such a great experience on so many different levels that we all knew we’d have to go back,” Laura says.
The opportunity began to take shape two years ago, when Jillian approached Friendship Circle, a Jewish organization in Stamford that pairs children with special needs and teen volunteers. Laura asked the organizers whether there was a child with Rett Syndrome whom Jillian could work with. “It was so bashert,” she says. “They had never heard of the disease, but coincidentally, 10 days prior, a mother had signed up her daughter Zoe, the first child with Rett to join the program.”
When Jillian had too much schoolwork, Abby would meet with Zoe; the two sisters still work with her. Last year, Victoria decided to follow in Jillian’s footsteps and climb Kilimanjaro for her mitzvah project. Abby and Laura joined her. “Working with Zoe and seeing her smile while playing gave me the motivation to climb for her,” Abby says.
The three began special training in the fall, doing heavy cardio workouts on a step mill, an exercise machine that simulates an escalator going down. They trained while wearing a backpack and hiking boots, to acclimate to the effort required for climbing. In January, Jillian asked to join the effort.
For eight days and seven nights in June, the Climb for a Cure 2 team made their way up Kilimanjaro, from desert to snow-covered glacier. They summited on June 14.
“It’s a very life-changing experience,” says Laura. “First, it took a lot of dedication during the school year for the girls to train. Then, we were in Tanzania, a Third World country where most people still live without electricity, running water, or indoor plumbing. On the climb, you don’t shower for eight days, you sleep in a tent, and it’s below freezing every morning when you get up.”
Then, climbers must learn how to take care of themselves on a mountain, while making as little impact as possible. You pack light, focus on where you’re walking, stay mindful so that you can think on your feet. There’s a lot of time to think and self-reflect, Laura says. “But sometimes you get into a rhythm, don’t think about much, and just climb,” says Jillian.
And the climbers support one another. “While the two climbs were the same in terms of difficulty, having my sisters there made a big difference,” Jillian says. “The first time, I was the one who needed support; this time, I looked after them.”
While the two younger girls could handle the physical requirements of the climb, “sometimes we became discouraged and felt we weren’t getting anywhere, says Abby. “On our way up to our third camp, which was at over 14,000 feet, it started to snow. For Tori and me, this presented a challenge because temperatures suddenly dropped and we were really cold. But we finally reached our camp. It was hard for everyone.”
Despite the challenges, there were fun moments as well, says Tori. “We still managed to have fun,” she says. “One time, Abby and I decided to zip our sleeping bags together, making one huge tube. Even though we didn’t sleep very well, everyone thought our idea was very funny and ridiculous.”
“Summit night” presented the most significant challenge, Laura says. That’s when the team woke up at 11 p.m., having slept in the high base camp. They climbed for six hours, reaching the 19,300-foot summit at sunrise. “We spent only 15 minutes up there, looking around and taking pictures, but it was so cold that we had to come back down,” says Tori. Laura says that climbing Kilimanjaro is about making the journey, not racing to the summit.
The most difficult aspect of the climb was the fear of the unknown during that night, she says “It’s pitch black; you’ve never experienced darkness like this, and you have no idea what the terrain looks like, just that it’s steep,” she says.
But the challenges and obstacles of the Kilimanjaro do not compare to those faced by girls with Rett Syndrome, says Tori.
The team spent one more night at the high base camp, then concluded their descent on the eighth day.
Jillian doesn’t plan to participate in a third climb. “For me, two times is enough,” she says. “I learned and grew so much from each one, and really enjoyed seeing my sisters have the same experience. On these climbs, you learn your limit, both mentally and physically. You learn to persevere through all conditions and keep going. I hope in the future our little brother will follow our footsteps and climb Kilimanjaro.”
So far, the Katz’ have raised nearly $35,000 for the IRSF.
For more information on their efforts: www.rettsyndrome.org; search “Climb for a Cure.”