Young boy with rare disease offers lessons in hope and gratitude
Mendel Cotlar had a way of putting people at ease.
He stood up for children who were being teased at school and warmly welcomed visiting adults at synagogue. He laughed often, but he took his torah studies seriously.
“Mendel was a very good-natured boy, someone who tried to reach out to people,” said Rabbi Yitzchok Schmukler, director of Chabad Bay Area’s Center for Jewish Life and Learning in League City and a longtime friend of Mendel’s family.
“He also was a fun-loving person.”
Two years after Mendel died from complications of Glycogen Storage Disease at age 13, Mendel’s kindness and enthusiasm for life continues to motivate others — children and adults — to follow his example.
Responses have ranged from good deeds, fundraisers to support Glycogen Storage Disease research and, most recently, the creation of a seminar focused on gratitude.
Embracing life with gratitude was the theme of the speech Mendel gave at his bar mitzvah in September 2014, several weeks before his unexpected death.
Schmukler and his family were guests at the bar mitzvah.
‘An uplifting message’
“We were so impressed with his speech dedicated to gratitude,” Schmukler said. “He presented it with humor, but it was an uplifting message, very inspiring.”
It also was an uplifting experience to facilitate the seminar inspired by Mendel, “Waking Up to Life,” at Chabad Bay Area Sept. 18, Schmukler said.
Mendel’s parents, southwest Houston residents Eta and Daniel Cotlar, worked with the New York-based Rohr Jewish Learning Institute to develop the seminar, designed to encourage participants of all backgrounds to choose to live life with gratitude and joy.
“Inspired by the theme of his bar mitzvah, basically his last message, they thought it would be beautiful to take it further,” Schmukler said.
The program at Chabad Bay Area, which drew about 30 people, was the seminar’s first presentation in the Houston area.
It has since been presented around the world, and participants have started expressing gratitude on social media with the hashtags #ModehAni — which refers to the Jewish prayer of thanks recited upon waking — and #ThankfulDaily.
‘A job to do’
Daniel Cotlar and Eta, meanwhile, have taken another step to honor their son’s memory and inspire others.
On Sept. 19, in honor of Mendel’s birthday on the Hebrew calendar, they launched thankyoumendel.com.
The site shares Mendel’s story, memories of him from others, information about and suggestions for doing a mitzvah — a good deed or charitable act — for Mendel.
Visitors can order free Modeh Ani cards from the site.
“Mendel left us almost with a job to do: to realize and spread the idea of how important gratitude is,” Eta Cotlar said.
Some of the blogs on the site are from cards and letters Daniel and Eta Cotlar received about Mendel after his death. Recurring themes in these messages seemed to be respect for Mendel’s gratitude, even for the simplest things in life; how important it was to him not to let anyone feel left out; and moments when Mendel stood up for and protected other kids from bullying.
Mendel was wise beyond his years in some ways, but he was a regular kid, too, who was known to get “shushed” from time to time for talking in class or talked to for rushing through assignments, his parents said.
Eta Cotlar doesn’t want people to think the way Mendel lived is beyond their reach, she said.
“You don’t have to be a perfect person to do good; you can still make a difference,” she said. “Within a normal life, you can do beautiful things.”
Glycogen
Storage Disease
Another thing that struck people about Mendel was his enthusiasm for living, from riding his bike to exploring outdoors to playing with friends.
“He loved to experience,” Daniel Cotlar said.
Mendel was fitting as much as he could into a limited lifetime, but no one, including him, knew that, his parents say.
Mendel had Glycogen Storage Disease Type 1a, a rare genetic metabolic disorder that had to be managed by dietary restrictions and an around-the-clock eating schedule. But the disorder didn’t affect the way he felt, and there was no reason to think the disorder would take his life at such a young age, Eta Cotlar said.
Those with GSD Type 1a have an enzyme deficiency that prevents their body from completely breaking down glycogen — the carbohydrate that serves as a fuel reserve for the body — into glucose for the body to metabolize.
This condition makes it difficult to maintain normal blood sugar levels between meals without constant feedings.
The disease poses the risk of complications, including impaired breathing, seizures, coma and death unless a strict dietary regimen is followed, the thankyoumendel.com site states, but many people with the disorder live well into adulthood.
Daniel and Eta Cotlar want people to know that researchers have identified the chromosomal defects of the disorder, and one researcher in particular is close to starting clinical trials for gene therapy.
“Mendel was so sure the cure was going to happen,” Eta Cotlar said. “It was not ‘if’ but ‘when they have a cure, I’ll go to Yeshiva, and I’ll be able to eat oranges.’”
Mendel, who was an eighth-grade student at Torah Day School of Houston, was survived by his brothers, Nosson and Aryeh, and his sister, Chani.
Link to original article online | Photo of newspaper article
Ways to help
uconn.givecorps.com/causes/5284-glycogen-storage-disease-program-fund
thankyoumendel.com/do-a-mitzvah-for-mendel
www.agsdus.org
Chabad Bay Area
Chabad Bay Area’s next adult education program, “How Success Thinks,” is scheduled for 7:30 p.m. to 9 p.m. for six Tuesdays beginning Nov. 15. The course fee is $99, and sessions will be held at 2047 W. Main St., Suite B7, in League City.
Register at www.jbayarea.org or by calling 281-724-1554.
Read more about it at www.jbayarea.org/4jli