Thursday, September 6, 2018

The story behind this year's New Year cards

If you receive regular mailings from the Malki Foundation, then you very likely have already seen the specially-designed Rosh Hashana cards that we produced for this year's New Year season. They're strikingly different from any previous year's and we're very  proud of them.

There are four designs, each card bearing one of those designs (all of them are here). Four cards, one of each design, were enclosed gratis with the annual report we sent out to our supporters in the past week. (We're of course selling them for anyone who wants to send them to their friends.)

There's quite a story that goes with the cards. It involves the Avni family – Gali and Keren and their two beautiful children Omri and Michal. For our purposes, their story begins three years ago when Michal was born. 

Gali and Keren realized there were problems with Michal’s development from about when she was two months old. Consulting doctor after doctor, they were given results and assessments that simply lacked clear answers. The uncertainty and fear - a phenomenon most new parents know - kept growing.

The young parents stayed hopeful. They felt the clarity they sought would emerge through genome sequencing - an expensive but illuminating process. And indeed those genetic results did throw some light on the mystery of their younger child. 

According to the diagnosis, Michal has an extremely rare genetic disease known until recently only by a cryptic string of letters and numbers representing a specific gene mutation: PPP2R5D. In the past year, that condition received its own name: Jordan’s Syndrome

There's very little that medical science actually knows about the condition. So to help their daughter, Keren and Gali set off on a worldwide search for information. They also sought out other families grappling with the same mutation in a child of their own. The social media helped - they found a support group for parents coping with the same very rare mutation and together with the other families they encountered this way, they are learning and researching.

They know they have a long road ahead - but Gali and Keren remain optimistic: “The potential is hidden in everything,” Keren told us. “It just needs to be seen.” 

The Malki Foundation has the privilege to facilitate essential paramedical therapies to Michal via our Therapies at Home Program. In Michal's case, this means Occupational Therapy, Horse-riding Therapy, Speech Therapy and Hydrotherapy. 

Now to the part about the cards. 

The original art-work for the Rosh Hashana cards (one of the four designs is at the top of this post) was done by little Michal herself. Her father Gali, a graphic designer by profession, then took Michal's creative drafts and, using them as his base, turned them into the sophisticated works of art you can see in our cards collection. The blend of father and daughter inputs is striking and, we think, very successful.

Here's the important message for the New Year that we think we relay via these designs. Michal, as of today, has 114 friends she doesn’t know who also receive therapies through the Malki Foundation. Your partnership with us makes this possible.

These therapies - always therapies that were declined by the families' health insurer (in Israel: Kupat Holim, of which there are four) - are tremendously important as well as greatly appreciated by us and of course by the children themselves. And as we keep saying. it's a privilege for us to be able to support parents who battle against adversity to do everything they can for a loved child with extreme special needs.

As we tell you in previous years, we could not possibly achieve all that we do without the support of our donors. We feel very blessed to have them as a Malki Foundation supporter and we can’t thank you enough!

On behalf of all of us at the Malki Foundation, we wish you and yours a very happy new year full of peace, prosperity, and growth.

Thursday, August 30, 2018

As the New Year approaches

Photo credit: Tom Azaria https://www.tomazaria.com/
SHANA TOVA!! Wish your friends and family the same with these one-of-a-kind cards designed by sweet Michal who is 3 years old and has Ppp2r5d -Jordan's Syndrome, together with her father, Gali Avni, a talented graphic designer.

Each of the daughter-and-father collaborations below is available as a Rosh Hashana card.

Contact us for details and to place your order at office@kerenmalki.org or by phone on 02-567-0602 in Jerusalem.

Purchase your own set and help support children with disabilities in Israel.





Thursday, August 23, 2018

Netanel: A day in the life

Meet Netanel. 
Actually many of you have already met Netanel through our Facebook posts and on our website. His mother, Sharon Orbach, has been featured in our video and has spoken at our benefit concert. 
And now, the child who doctors said would be a "vegetable" has his own Facebook blog: A day in the life of Netanel Zinger יום בחייו של נתנאל זינגר
Be sure to click like.
You can read more about Netanel at our website hereAnd for some previous blog posts about this very special young man and his amazing family - click here.

Monday, August 20, 2018

Summer fun and remembering in Ma'ale Adumim

The way Malki would want to be remembered: summer fun for kids. 

Last Wednesday in Ma'ale Adumim - Park Hapil (Elephant Park), the annual Ezra fair in memory of Malki z"l and of several bogrim (children of the Ezra youth movement) was held.

Malki was one of several youth leaders from Jerusalem who got this branch of Ezra off the ground in the year 2000. Heart warming to see her contribution is still remembered.

Here are some of the photos from this wonderful event.  Thank you תנועת הנוער עזרא for keeping Malki's memory alive in a way that truly honors her spirit.  

#summerfun #mayhermemorybeablessing #malkiroth #ezrayouthmovement #thankyou






For some notes on some previous EZRA fairs - see "How hard memories are turned into constructive deeds" (2016) "Giving as remembering: Lessons from teenagers" (2015), and "15-Jul-13: Summer reveries don't have quite the same golden gentle glow for us as they do for others".

Thursday, August 16, 2018

Helping Itamar get to stand on his own two feet

A child who could be Itamar but is not (also: Itamar is not the real name
of the child in this post)
Jennifer Shaw Racz, the Malki Foundation's development specialist here in Jerusalem, writes:

We never ask the families of children with special needs who are admitted to our programs to tell us how the Malki Foundation's involvement has affected their lives. But for a whole complex of reasons, they sometimes choose to tell us anyway. And we're always interested to know.

We received a letter very recently from the family of Itamar, a very special child of about two and a half living with his parents in a town in the northern part of Israel:
"Thank you, thank you, thank you for your constant help. The atmosphere in our home has changed completely since we started in the Malki Foundation program. The changes in our son [resulting from the therapies which the Malki Foundation's Therapies at Home program makes possible] have given us a whole new outlook on life. We are so appreciative and thankful for your help! Keep up the good work!"
From his birth, Itamar's father and mother knew their baby had multiple congenital anomalies including heart and corneal defects. Today, he is fed via an implanted tube and is subject to severe developmental delays.

When we met him, he was not yet able to hold up his head. A few tries at a rehabilitation day center failed because of the complicated nature of his situation. Itamar stayed at home, mostly lying in bed throughout day and with no therapist available to address any of his needs.

Then the family learned about the Malki Foundation's work, and applied for support. Itamar was accepted into our Therapists on Wheels program and we're delighted to say that, in their words, they have new hope. 

Itamar is visited weekly by two highly experienced therapists - one for speech therapy, the other for physiotherapy. They are helping him make wonderful progress in his development. 

The physiotherapist, Dena, has helped him learn to use a specialized stander that gets him upright with the added benefit that it improves his breathing, helps him develop balance and contributes to his building bone mass. 

Dena is also involved in helping the family learn how to better meet Itamar’s many needs at home. For instance, how to do specific exercises with him that will contribute in substantial ways to his continued physical and mental development.

Itamar's most recently updated medical report says that for the first time, he is able to crawl on all fours and to pull himself up to a standing position. As his parents now see, paramedical therapies, delivered by competent professionals in regularly scheduled visits, can achieve wonderful results.

We have no problem believing that what is now happening with Itamar is changing his family's life in the most positive of ways.

Their journey is undoubtedly a difficult one but if we can help it to be a little easier to navigate, then we feel the Malki Foundation’s support has been delivered to the right people and in the right way. It's gratifying to hear that Itamar's family agrees.  

Thank you for helping to make this hope happen. We couldn’t do it without you.

---

A reminder that the Malki Foundation's therapy programs have enabled many tens of 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. Although the child in this story is not really called Itamar and this is not him in the photo above, the facts are absolutely true.)

Thursday, August 2, 2018

At the grave-side: How things can come full circle

Malki's grave
At the very end of Wednesday's azkara memorial service beside the graves in Jerusalem of best friends Malki Roth הי"ד and Michal Raziel הי"ד, a young man, Itamar Hevroni, asked to be allowed to speak. Itamar and the girls grew up in the same neighborhood. All were members of the same age-group that worked its way up from elementary school to the end of high school through the ranks of the EZRA youth movement which is especially active in Jerusalem. Here, translated by us from the Hebrew original [posted by Itamar on his Facebook page], is what he said.
When I was growing up, I lived near Malki and the Roth family. Neighbors have a special kind of relationship. You pass each other, you say “good morning” or “good evening” and so on. And generally that’s it.

But, actually, it's something a lot larger. You get to see your neighbors at every stage of their lives and of your own. From leaving for work in the mornings, to the nightly walk with the dog when eyes are clouded over with the burdens of the day. 

You notice them leaving for vacation with their heavy bags and coming back home from doing the shopping, laden with groceries and packages. But you also see other things - like children growing up. Moving from school bags to the backpacks for soldiers and for national service. It’s so natural that you don’t even really notice. 

But when you stop and pay attention, the idea of "neighborhood" becomes deeper and far more special.

Living alongside the Roth family, I had the privilege of seeing another aspect – how they cared for their daughter Haya at home.

Many images enter my mind – Arnold carrying Haya up the stairs; Frimet taking Haya in the stroller and making adjustments to help her sit more comfortably. And Malki z"l taking Haya out together with her two other younger sisters Pesi and Rivki. 

Malki, her parents, and five of her six siblings (obscured)
at a family celebration a few weeks before she was murdered
What I saw there was optimism and, even more than that, determination to have Haya continue to live with them at home, to be with the family always. And to provide her with everything that she needed.

Then seventeen years ago, the disaster. 

The devastating terrorist attack at Sbarro that took the lives of fifteen shining souls, among them Michal Raziel and Malki Roth. Two members of my Ezra youth group in Ramot whose lives and deaths I have never forgotten. 

My memories of them are alive and vital in my mind and have resurfaced in my life over the years. But the last thing I imagined was that I would meet with Malki again, in a very personal way and at an important juncture of my life.

Let me explain that.

In the wake of the horrifying tragedy, Frimet and Arnold nobly founded the Malki Foundation - Keren Malki (in Hebrew). It was designed to encourage and support parents of children with special needs who raise their children at home in the family setting. 

I got to somewhat know the organization in its early stages. So how did it all come full circle?

Our daughter, Shaked, is now three and a half. She was born with a rare muscular disease that affects her motor abilities. As part of her treatment, just two weeks ago, I found myself at the lending center of the Yad Sarah Organization in Jerusalem. I came there in order to borrow a child's walker that would make it easier for Shaked to her develop her walking skills. 

Itamar posted this picture of his daughter
on his Facebook page
The walker is defined as ‘special equipment’ so the people there sent me to a warehouse on another floor which operates as a separate unit within Yad Sarah. Only after completing the formalities for borrowing the item did I notice that the unit had a name: the Keren Malki Equipment Lending Unit…  

It’s hard to describe the shiver that went down my spine at that moment. That and the intensity of feeling that engulfed me. I remembered that in another two weeks I would be standing by your graves – Michal and Malki – as I have done every year for the past seventeen years on this date, the 20th day of Av.

I knew right away I would tell this story there.

Now I’m here and I’ve told the story: a story about a meeting. 

Thank you Malki for another meeting in this cycle of life that keeps going round. And for the honor to be at the receiving end of a gift from you. You – whose entire life was about kindness and giving. And here, even after your death, in a Kiddush Hashem (sanctification of the name of G-d) you continue to do chesed (acts of loving-kindness).

Thank you, Frimet and Arnold, for perpetuating Malki’s memory here and everywhere. For continuing Malki’s work in this world.

Wednesday, August 1, 2018

Together forever

Today, August 1, 2018, is the 20th day of Av in the Hebrew Calendar.

It's the date that marks the 17th Yahrtzeit (anniversary of the date of death) of Malki Chana Roth z"l, who was tragically murdered at the age of 15 together with her friend Michal Raziel z"l, when they stopped to have pizza at the Sbarro restaurant in Jerusalem. 

As they waited at the counter, a terrorist entered the pizzeria and blew himself up, murdering 15 people, many of them children, and injuring 130 others.

Malki is remembered as a sweet, bright, conscientious daughter, sister and friend who helped her parents with her much-loved special-needs sister, other families of children with disabilities, classmates, and pretty much everyone she saw who needed something.

The Malki Foundation was founded to perpetuate her memory and empowers families of children with disabilities who care for their children at home.

Please honor Malki and Michal's memories by doing a good deed, and help spread their essence in the world.

יהיה זכרן ברוך - may their memories be for a blessing.