Here's why the Malki Foundation exists

Image: Nir Alon, Photographer, on a visit to a beneficiary family

The decision my wife and children and I made in August 2001 to establish a not-for-profit to do constructive and helpful things for families with a child suffering from serious disabilities stemmed from two extremely challenging realities in our lives.

The first was that our youngest child, born healthy and beautiful, became catastrophically disabled before her first birthday. This turned the life of our family on its head, changing almost everything.

The second was that the eldest of our daughters, Malki, was murdered in a human-bomb attack on a pizzeria in the center of Jerusalem. We were left devastated by unanswerable questions.

Malki was just fifteen. The beautiful life she had been living and the bright future that we were sure lay ahead came to an end without our having even a moment's notice to prepare ourselves.

We knew very little in those unspeakably black days except that we needed to remember Malki and ensure others did too. More than anything else you will read below or elsewhere, this is the reason we created the Malki Foundation: so that people would know what all of us lost.

The foundation that bears her name is now in its thirteenth year. The things it does, how it does them, who benefits, who supports - these are important matters, and described on the Malki Foundation's website, Facebook page, and the other on-line sites listed over there on the right side of this page. Also, via regular mailers sent to our supporters by the outstanding team of professionals that manage the Malki Foundation's day-to-day work.

It has always been important for my wife, Frimet, and me to emphasize that, as passionate as we are about the Malki Foundation's success, we have always endeavoured as founders and board members to stand back and support the management team so they can do their vital work in the best, most effective way. We are of course involved, even intensively involved at times. We take our roles seriously. But we are strictly unpaid volunteers. That fits our view of how respectable charities ought to be run.

With the background explained, allow me to share with you some insights into the extraordinary effectiveness of Keren Malki (the Malki Foundation's name in Hebrew).

It has always been important for us to ensure that our three programs meet the needs of the families we seek to help. Closely analyzing the data we collect has become, and will be even more so in the future, an essential part of tailoring the growing organization's work, budget and plans.

As part of that process, we have been reviewing initial results from a confidential questionnaire sent to a sample of the Malki Foundation's Therapies at Home program beneficiaries. Other than being families that have made decision to have their child with severe special-needs live with them at home, they are as varied as any other cluster of families living in Israel.

A handful of highlights. These comments, most of them translated from the Hebrew original, were received in the past few weeks:

• Do they feel the child achieved benefits from the therapies that are enabled via the Malki Foundation's program? So far, every response has answered "yes". (Responses are anonymous unless the families volunteer their names.)
• Comment: "Very happy with the quick and organized help we get from Keren Malki. The health fund, for reasons of their own, do not currently give us any help at all though our daughter has been officially assessed as 100% disabled. We hope we will continue to get your support next year." [Current support from the Malki Foundation is for physical and speech therapy.]
• Comment: "A lot, a lot of improvement. I said his name and he looked at me and waved. He has never done that before..."
• Comment: "[Our daughter] really wanted horse therapy and now that she gets it, she loves it, never misses a lesson... It strengthens her hips and her back and also provides emotional therapy. Though she 'hates' physiotherapy, she loves and enjoys the horse therapy so much. Even her therapist reported a distinct improvement..." [The health fund denied this family any horse-riding therapy coverage.] 
• Comment: "Thanks to you, our child can get physiotherapy. This helps and advances him a lot. Without your help, we would not be able to afford this... The amazing attitude towards us makes things easier on us and really encourages us  [Child attends a day-treatment center and is not institutionalized]
• Comment: "He is our only child so far after (x) years of marriage,.. We have seen a really big improvement. He is learning to walk and there is a huge improvement in the way he now relates to his surroundings. The way he has improved makes us very happy and your help is tremendously important to us."

There is a great amount of detail in the results, which makes for interesting and uplifting analysis. Keep in mind that every request for Malki Foundation support is given on the explicit basis that health fund or government-funded therapy entitlements must be used up in full by the family before our support kicks in. It's a carefully calibrated system that ensures no overlap and maximum utilization of the funds we raise from donors. And this: we see it as vital that the government and the health funds are not let off the hook. I am happy to expand on this important point for anyone interested to delve into these critical issues more deeply.

We are currently preparing to publish a solid analysis with the help of health and welfare professionals. If we can change the social agenda so that children with serious disabilities are given a chance at much better outcomes, then we will. Nothing would capture more faithfully the message of Malki's passion than that. 

Meanwhile the broad picture is clear to us: every incremental achievement, every tiny baby-step of success, happened to these families not because of what they received (or did not receive) from 'official government channels' but despite it.

That is not a statement that a proud citizen likes to make. But it is demonstrably true. More than anything else, the evidence reaffirms the central role of family support in achieving better outcomes for children facing challenges that most of us have never known ourselves.

For the support you provided during this past year, my sincere and deep thanks. I hope you will stay with us on the journey. We are doing honest, good and effective work to benefit families and children who deserve much more than they get today. Can you think of a finer mission?

Donations made before the end of the 2014 financial year (that's just two days from now for Israelis and US citizens) are especially welcome.

• To donate from Israel, please click here. 
• And from the United States and elsewhere, please click here.
• For Australians, though this is not the end of the financial year, and though donations are not tax-deductible under Australian law, your contributions are definitely welcome always: click here.
• From the UK, where we are registered with the Charities Commission, and where the financial year ends in February, please click here. 

Arnold Roth

Honorary Chair - The Malki Foundation