Since its inception on September 11, 2001, the Jerusalem-based Malki Foundation (in Hebrew: Keren Malki) has been providing practical and efficient programs that empower families from every part of Israeli society to provide home care for a special-needs child
Tuesday - today - is Yom Hazikaron here in Israel, Memorial Day, a day of national reflection and introspection when Israelis unite and remember the huge price paid by so many so that we can live in this country and make productive and peaceful lives.
You may be aware that the Malki Foundation is named for Malka Chana Roth.
Malki's younger sister, Rivki Roth Rappaport, was interviewed for Yom Hazikaron in the community where she lives with her husband and children. She and other members of bereaved families spoke about their loved ones and the unbearable loss.
Please spend a few minutes to watch and share your thoughts in the comments. (Click on "CC" if the English-language subtitles do not automatically appear.)
We received a call a few weeks ago in the Malki Foundation office in Jerusalem from Rachel, a social worker at the ONN School, a special educationinstitution in the Tel Aviv suburb of Zahala.
She had heard about the Malki Foundation's work after one of the school's staff members made a presentation about Malki and the Foundation in honor of Yom Hazikaron (Israel's Memorial Day). Now she was calling urgently to get help for Yoav, a student at the school who was in great need.
“His father is collapsing from the financial and emotional strain,” she said. Yoav is 16 years old and lives with his father in Tel Aviv. He is an avid sailor and loves music. He even won a prize in a sailing competition last year.
When he was 4 years old, Yoav's parents realized he was falling a lot. He seemed to lack the strength they saw in other children his age. The diagnosis they got was Duchenne Muscular Dystrophy (DMD), a genetic disorder characterized by progressive muscle degeneration and weakness.
Because the DMD affects all the muscles in Yoav’s body, he has been using a motorized wheelchair since he was 8 years old. The DMD also affects his lungs, which has led to problems with his breathing; his lungs fill up with mucus and he needs to use a special machine in the mornings and at night to remove it and help him breathe.
Yoav was born in Israel to French parents. After the diagnosis, Rachel explained, the government offices who were supposed to be providing for his health and general welfare refused to grant him any treatments. Their argument: “Until he is in a wheelchair, we can’t recognize his disability and therefore cannot provide care”.
Still able to walk at that point in his life, Yoav did not qualify for the care he needed and his parents felt they had no choice but to bring him back to France where he lived with his mother from age 6 to 14. During those years, he attended a special education school in Paris.
Throughout those years, the father, living in Israel, traveled back and forth to visit him. By age 14, antisemitic bullying in the school got to be too much and his father brought him back to Israel to live. Since then, he has been attending the Onn School.
Physical therapy is essential so that Yoav’s lungs function better and to prevent the accumulation of phlegm. But the twice-a-week physical therapy he gets at school is simply not enough to meet those critical needs. The result is that Yoav has been in and out of hospital with bouts of pneumonia and additional respiratory issues. He lacks an appetite and, as a result, is significantly underweight. He also suffers from iron deficiency and the problems that this brings on.
Rachel explained that the bills for therapies, medications and hospitalization expenses have been and continue to be financially debilitating for Yoav's father. He doesn't know where to turn for help.
Rachel’s call to us started the process of an expedited application for our Therapies at Home program (TAH). The Malki Foundation acceptance committee understood the urgency and Yoav got our approval for additional physiotherapy therapies (funded by the Malki Foundation program and delivered by the family's choice of therapist) within days.
The additional physiotherapy sessions that the Therapies at Home program makes possible are already lightening the load that has been sitting so heavily on the shoulders of Yoav’s father. Everyone in this story hopes they will help to avoid the need for more hospital visits for Yoav. And that he will find it easier to do the things normal teenagers want to do – listen to music, socialize with friends, and - in Yoav’s case - sail on the Mediterranean.
We hope to be able to report on his progress in the near future.
A reminder that the Malki Foundation's therapy programs have enabled many thousands of therapy sessions for families in Israel whose needs are nominally met via the conventional government channels or in the framework of their child's education. None of these therapy sessions would have happened if the families had to rely only what the government and the health funds provide. Our work makes a positive difference for hundreds of families and the children with special needs (some of them profiled here) whom they love.
(Though the facts and figures in our blog posts and promotional materials are always true and correct, the children's names and photos used in these published file reports are always fictitious in order to protect the privacy of the child and the family.)
The BAYT in Toronto'sThornhill section [Image Source]
Last month, Keren Malki's co-founder and honorary chairman Arnold Roth was a keynote speaker at Toronto's community-wide commemoration of Israel's 67th Independence Day and the day that precedes it each year - Yom Hazikaron, Israel's national Memorial Day.
Annually, it's a formal occasion, very well attended, and marked by full-hearted solemnity and celebration.
This year's was held on the evening of Wednesday April 22, 2015 at The Joseph and Faye Tanenbaum Synagogue Centre of Beth Avraham Yoseph of Toronto, known more familiarly as The BAYT - a community center worthy of the title.
In his speech, Arnold reflected on what some consider the strangeness of a day of deep sadness being bracketed closely with national jubilation. His speech, under the title Remembrance and Redemption, is the subject of the video embedded below. In it, he touches on the song that Malki, his murdered daughter, composed in the last year of her life: several versions of it, all freely downloadable, are here, along with some of the background to its creation and aftermath.
He also shared aspects of a not-so-pleasant experience - as Israel's representative - addressing an international conference on terror and its victims, convened in New York City by the Secretary General of the United Nations in 2008. (A Haaretz report of that conference and of Arnold Roth's speech is here.) That speech is the source of the audio track accompanying a short introductory film clip that was shown to the audience in Toronto and which takes up the first 4m 20s of the YouTube video below.
Published here with their permission, this video is extracted from Mizrachi Canada's longer video recording (online here) of a memorable night of communal introspection and celebration.
Our thanks to Mizrachi Canada's board, its executive director Rabbi Meir Rosenberg and this year's event chairman David Shore, for hosting Arnold and for allowing us to reproduce the video here.
Arnold's Toronto visit included more than a dozen additional speeches he made to college and high school student groups, some inside the city's Jewish community (including local synagogues), others in secular institutions. He focused mainly on terrorism and the challenges it poses to Israel and to other democratic societies and - naturally - giving an introduction to the work of the Malki Foundation.
Malki Foundation honorary chair Arnold Roth will be guest speaker at Mizrachi Canada's annual Evening of Commemoration and Celebration in honour of Israel's Memorial Day and Independence Day (in Hebrew: Yom Hazikaron and Yom Ha'atzma'ut).
Time: Wednesday April 22, 2015 - commencing 7:00 pm
Venue: The Beth Avraham Yoseph of Toronto synagogue, 613 Clark Avenue West, Thornhill (Toronto)
Arnold will be speaking publicly and privately at several other Toronto venues during the week of April 20, 2015. We will post details here as they become public.
