Thursday, February 6, 2020

To a nameless supporter

Some thoughts that follow here are triggered by a very welcome but entirely unexpected seven-figure donation received (via a well-known investment bank) by the Malki Foundation in the US this week.

From an anonymous donor.

Over at the Aish.com website, they remind us of how Maimonides, one of classical Judaism's most influential thinkers and scholars, famously stated eight distinctive levels of charitable given.

Near the top of his list is giving anonymously. And right ahead of that in significance is giving "where the donor doesn't know to whom he gives and the recipient doesn't know from whom he receives".

Higher still, the pinnacle of the Jewish scale of donating, is where the anonymous giver establishes a personal relationship with the needy person but in such a way that the loan, the job, the grant or whatever the charitable act is, is done in a way that allows the recipient to no longer have to rely on others [Mishneh Torah of the Rambam, Matanot Ani'im 10:7-8]

He writes that the greatness of an anonymous gift is in its being "a commandment fulfilled for its own sake" as distinct from one that's done in order to obtain honor. And that a no-less-important consideration is the imperative of not shaming the recipient.

Experessed in contemporary terms, Maimonides says giving to a reliable charity where the people managing the fund know the identity of the recipients (of course) but no one else does is a way of fulfilling this superior level of charity. The person in need feels no shame because only the people doing the administering - and not the donors - know where it goes.

Here at the Malki Foundation, we have learned to be sensitive to the privacy and to the self-respect of  the families and children we support and serve. When we publish names and faces, we explain that they are not the real names and not the real faces but that the facts we describe when we tell about the child and the child's special needs are always real and accurate.

To our respected anonymous donor: We have no way to get this message to you other than by broadcasting it here. But we want you to know it's a privilege and a pleasure to be entrusted with your charitable giving and to know that you trust us to use it wisely, efficiently and effectively.

Our sincere thanks to you, dear unknown friend.

Sunday, February 2, 2020

Up and away: Lia's family take on Down Syndrome

Another Sunny Sunday story.

Lia is a sweet, striking five-year-old girl who happens to be born with Down Syndrome. (As always, a reminder that we almost never publish the actual name or likeness of children in our programs. The facts of each case, however, are always completely accurate and true as published.)

Accepted into the Malki Foundation’s Therapies at Home program in 2017 when she was two and a half years old, this lovely little child's skills were limited: she could manage to sit by herself, stand up with the help of someone else, and crawl by pulling herself along on her stomach. She was unable to walk and had reached overall developmental milestones appropriate to those of a 10 month old baby.

With the help of our backing, Lia's family got her started with intensive physiotherapy twice a week. After a year, she had already started crawling properly, could stand unaided and was able to take a few steps by herself. 

In fact, the progress report we received at the end of that year quantified this, showing Lia had already improved to the point where she was functioning at the level of a 15 month old.

Then a year ago, we were told that Lia’s walking at the age of three and a half had stabilized. She could walk independently. She can also say a few words. And aided by an Apple iPad, she can communicate with the world around her.

Often, with the right help and determinations, children with Down Syndrome reach their development milestones - but do it just a little slower than other children would. Lia, with the peerless help of supportive parents and quality therapeutic intervention, is an example of that. 

Here at the Malki Foundation, we are so proud of being part of her amazing progress!

For more stories about the Malki Foundation’s kids, please go to https://kerenmalki.org/kids/

Please keep in mind - and tell your friends - that no fewer than eighty families from every part of Israel's political, ethnic and religious spectrum are currently on the Malki Foundation waiting list, waiting to see their child benefit in ways similar to how David and his family have.

We simply don't have the financial resources to admit them. This is a terrible shame. If you can help us make the waiting list a little smaller by clicking here, you will have our sincere appreciation.

Sunday, January 26, 2020

Chaim's new sister

Chaim is not his name. This is not his photo. But the details
here are absolutely true.
Remember Chaim?

The short version: Born with epilepsy, autism, and Cerebral Palsy. Now nine and a half years old and with the help of determined therapists and parents, he has made amazing progress. From tentative first steps, he's been making significant improvement in his walking ability.

Last week our team surprised him with a home visit. We were also surprised by what we witnessed there.

Chaim has a little sister, Sara. She is a year and a half old. Since she arrived into the family, Sara has become more and a more an essential part of Chaim’s life. 

The occupational therapist actively involves Sara in the sessions to stimulate them to play together and to share toys. Thus Sara helps in Chaim’s development, throwing balls for him to catch, sharing toys with him and generally being good company. 

At the same time, Chaim is still the older brother whom Sara admires and sees as an example. So she mimics many of the things he does.

This interaction between siblings was beautiful to see. It opened our eyes to the “ordinary” lives that children with disabilities have - just like anyone else’s. 

Sara’s way of looking at and being with Chaim is inspirationalo - an example of how inclusion is important and beneficial for everyone.

To see more Malki Foundation children stories, go to https://kerenmalki.org/kids/

Thursday, January 23, 2020

Love, hope, Malki

Malka Chana Roth Z"L in honor of whose tragically short life the Malki Foundation was established in 2001 knew the importance of family support for a child with disabilities. 

In a letter sent to the American magazine Exceptional Parent when Malki was just eleven years old, and published in its July 1997 edition, she wrote about her little sister:
“Haya-Elisheva has quite a lot of problems. She has Lennox-Gastaut syndrome and is severely mentally retarded. She is a lovely sister. I love reading stories to her and cuddling up with her. Although she does not respond on the outside, I know she is responding on the inside”.
This special sibling love and connection was a trait that exemplified Malki and a reason that the foundation exists in her memory. 

Every day we work to bring honor to Malki’s memory by staying true to our mission of helping children with special needs and empowering their families.

Sunday, January 19, 2020

About David who can now pull himself across the floor unaided

David is now two and a half years old.

Here at the Malki Foundation, we have known him for most of his life. (Of course, we also know David is not his real name. In telling about our work, we try hard to avoid using either the real names or the real photos of the children whose families we support. Naturally, everything else we share about David and the other children is entirely true and unembellished.)

Born with a rare and difficult genetic condition, CHARGE Syndrome, he is affected by severe development delay, hearing loss and blindness. 

When he was seven months old, David's mother turned to the Malki Foundation for support via our Therapies at Home program. That's where the lion's share of the funds we have raised from supporters since 2001 goes.

She explained that David would lie on his back all day long unable to turn his head or even hold it up. He had limited use of his hands and had serious difficulty with his eating due to severe oral muscle weakness.

David, she explained to us, needed intensive one-on-one physical and oral therapies. They were the key to strengthening his muscles and ensuring that he would acquire the ability to feed himself. 

Another crucial goal was to benefit from speech therapy in order to develop his verbal communication skills; David’s blindness makes it impossible for him to lip read.

Four months into the therapies program that the Malki Foundation's support was instrumental in enabling, David was already capable of rolling from front to back and from back to front. He could hold his head up and clap his hands. He could touch his head when requested, and he could and did wave back when someone wished this sweet young man “shalom”.

In her latest update letter to us, David’s mother writes:
“Physically he has progressed tremendously… The therapies have enabled him to pull himself across the floor alone. He seems such a bright child with so much potential.”
As with every single other other child in the Malki Foundation's programs, we are intensely proud and pleased to be part of David’s journey. We look forward to following his growth and seeing him reach the milestones that await him. 
 * * *

No fewer than eighty families from every part of Israel's political, ethnic and religious spectrum are currently on our waiting list, waiting to see their child benefit in ways similar to how David and his family have.

We simply don't have the money to admit them. This is a terrible shame. If you can help us make the waiting list a little smaller by clicking here, you will have our sincere appreciation.

Thursday, January 16, 2020

To understand and to be understood

Communicating (illustrative)
Lisa Scharf, a seasoned and highly regarded speech therapist who is one of the cornerstones of the Malki Foundation's Zlata Hersch Memorial Therapists on Wheels Program, has been working with Dror ["About Dror"] and other children in Israel's southern periphery communities. The outcomes are impressive and very moving.

This week, she sat down to share with us some aspects of what's entailed. 
“My method is different from many other therapists. Normally professionals treat their patients. But I believe we should work with all the family. It is more complex, but also more realistic and effective.” 
According to Lisa, the home treatment enables the therapist to understand more about the family’s life and relationships, enabling him or her to formulate a session that best fits with their conditions and needs. 

Moreover the process has the effect of empowering parents by helping them find ways to stimulate the child and to continue the therapeutic benefits between sessions.

Lisa explained that her work is not limited to speech but addresses communication in general. There are cases where the child may not manage to acquire the skill of articulating words but will learn to communicate by means of Assistive and Augmentative Communication (AAC) devices. 

The most important thing, she emphasizes, is to give the child 
“a way to understand and to be understood, to communicate with the people around them and impact their world. The younger we start working with the child and AAC the better results we get, and we see the child being able to interact with the world around. And sometimes it even leads to actual speech.”
Speaking of her work with Dror, Lisa shared some initial impressions:
“On my first visit to Dror’s kindergarten, all the teachers and assistants told me that he didn’t understand anything that was said to him and was incapable of using a computer for communication. I knew they were wrong. I could see that Dror understood and that all he needed was encouragement and the patience to learn how to use the device.” 
After months of speech therapy along with occupational therapy - to improve his finger control and pointing - Dror today uses his computer to communicate his needs, wants and feelings. He is even starting to say a few words.

Treating children with complex needs calls for a special type of professional. Lisa viewed this as her calling from a young age. She maintains a special connection up until today with the children she treated years ago. She makes sure to check in with the families from time to time and to enquire about the child’s progress even years after her involvement frew to a close. 

Therapists like Lisa, and families like Dror’s, inspire us each day to work that little bit harder to help build a better world in which all children will be given the same opportunity as Dror. 

Sunday, January 12, 2020

About Dror

A few lines about Dror. (That's not his real name and this is not his photo - for reasons of preserving everyone's privacy. All the other details, though, are factual and true.)

He's not an illness, not a statistic, not someone's challenge.

Dror, a sweet child, is a young energetic person with a life ahead of him, who lives with his family on a kibbutz in Israel's south. He is four years old.

Dror was born with a rare condition called Pitt-Hopkins Syndrome, characterized by intellectual disability and developmental delay. Some 70% of people who have this syndrome are unable to speak.

But from the outset, Dror’s parents decided he would be amongst the 30% that do speak.

To achieve their goal, Dror needs intensive speech therapy. He gets some of that in his kindergarten. But ambitious goals call for extraordinary efforts and that's what Dror's family is ready to make. Unfortunately the family’s kupat holim (in American terms, its HMO) declined the opportunity to fund the essential extra therapy sessions.

Which is where the Malki Foundation stepped in.

Lisa, the speech therapist assigned to Dror via the Malki Foundation's Zlata Hersch Memorial Therapists on Wheels Program, has been working with him and his family now for about two years. And at this point, Dror can already say eight words!

Dror’s mother recently wrote us a note (in Hebrew - the translation is ours):
“I truly believe in the education provided to Dror at the special-ed school he attends. But I believe even more that the people with whom he is most motivated to communicate are with my husband and me... We live in an area where it is extremely difficult to find a therapist. Thanks to you, we received Lisa and have learnt how to be more exact with Dror’s needs, and to develop communication with him.”
Home therapies are vitally important to achieving the best outcomes for so many of the children whose families we support. We are honored to be part of Dror’s continued growth!