Focus on a family: Special times, special challenges

Another reminder today that while the Coronavirus crisis has impacted everyone everywhere, it's an impact that falls unequally. 

And as our recent posts here on this site and via our Facebook page (here) underscore, the work of the Malki Foundation hasn't stopped. 

Danny is five years old. Partly blind, and diagnosed with Down Syndrome, he can crawl short distances and take a step or two with support. He uses simple sounds and gestures to make himself understood and responds to, and understands, simple instructions.

We spoke with his mother this week. Unsurprisingly, the focus of the conversation was on the challenges that accompany families raising a child with special needs - challenges which are sharpened at times like these.

"The kindergarten gave us an iPad to help with communication. But Danny is not really co-operative. We are hoping that will slowly improve over time. We don't have a walker at home or any other equipment which makes physiotherapy very difficult. We are doing the best we can under the circumstances."

Danny's progress has been helped by the MEDEK therapies he has gotten with the Malki Foundation's help. That's him (with his face obscured for privacy reasons - and Danny is not his real name) in the recently-snapped photo above.

The picture shows him in hands of the remarkable Alan Shapiro, a MEDEK practitioner and highly regarded physical therapist in Jerusalem.

The support enabled by the Malki Foundation's generous donors make a real difference to families like Danny's. We're glad and grateful you are part of them. 

Focus on a family: In and out of hospital

How are the families we support - they and their child with serious special needs - coping in the challenging circumstances of the plague?

Hila, 8 years old, has a rare spinal defect as well as hearing and vision impairments. She can sit by herself and recently started taking a few steps with some support. 

She communicates with the help of an Assistive and Augmentive Communication (AAC) device. A speech therapist funded by the Malki Foundation, working with the encouragement of her parents, has taught Hila to use the device and to make her needs and reactions understood.

Hila is frail. Her health is such that she has had to spend long stretches of time in hospital. And that is where she is now. 

Says her mother in a conversation with us putting a positive face on a not-so-simple situation:

"At the beginning of the 'Corona holiday', Hila was in hospital and then released. But very quickly she had to be re-admitted. So at least, in between everything else, she is getting her therapies."

With all of us facing situaions that are often complex and always testing, and with virtually all of mankind aspiring to be at home, it can be hard to imagine how complicated a hospital stay for a child of eight can be under today's circumstances. 

We send our warmest wishes to Hila and her devoted parents for a quick return to health and to home.

(We are posting several posts this week (here's yesterday's) dealing with families who care at home for a child with extreme special needs at a time of special challenges for everyone. In keeping with our customary policy on privacy, Hila is not the lovely child's name. Nor is that her photo at the top of the post.)

Focus on a family: Virus outside; loving support within

The Coronavirus crisis has brought normal life to a halt in ways none of us have ever seen before. But people's needs haven't come to a halt. In fact, they're more pressing than ever, in many cases.

Though circumstances have dictated that we lower the frequency of Malki Foundation posts here on this site and via our Facebook page (here), the work of the Malki Foundation hasn't stopped. 

In the coming days, starting now, we plan to highlight some of the families we assist and how they are handling the current situation.

Let's start with Gaya, a girl of 12 years old from the Tel Aviv area. She has severe developmental delay, is able to take a few steps with the help of a walking frame but is unable to speak. She is partly blind and fed via a PEG tube. 

Gaya lives with the rest of her family, sleeping at home every night and cared for by loving and conscientious parents. 

Thanks to what we're all enduring, the weekly physiotherapy and occupational therapy sessions Gaya normally receives at the local special-ed school she attends have stopped for now, along with the school classes. 

Beyond those, because she's a participant in the Malki Foundation's Therapies at Home program, she normally also has weekly supplemental hydrotherapy and physiotherapy sessions. These therapies are essential for Gaya's continued development, contributing to her breathing and general muscle strength. 

Gaya's mother has just been in touch to give us a brief update and reports that their amazing physical therapist keeps coming to the house to administer therapies to Gaya. 

"This is the bare minimum we can do under the circumstances," she wrote. "It is so important for Gaya. Thank you for your willingness to help during these tough times."

As most of us are learning, the ability to cope under trying circumstances starts with a strong support structure. We're proud to be part of what helps many families in Israel get through this. 

And to our faithful supporters: thank you for your role.

(As we normally do, both the name and image we use to illustrate this absolutely true report are borrowed so as to preserve the family's privacy.) 

A concert that should have been - and will be

Artists ready. Musicians at their places. Sound check. Hit it!

Final rehearsals: that's where we ought have been at this precise hour. But for reasons everyone knows only too well, we're in our homes, sheltering from an invisible threat, wondering what's ahead.

Our thoughts can't help but dwell on how Richard Shavei Tzion should be leading the Ramatayim Men's Choir right now, along with the incomparable Shai Abramson and the terrific singer, Akiva.

This ought to have been when everyone was making final preparations for the 8:00 pm start of the annual Malki Foundation Rainbow of Music concert. The Jerusalem Theatre ought to be filling up with eager ticket-holders as these words are keyed in.

But it isn't happening.

Instead, we - the audience, the performers, the Jerusalem Theatre staff, the Malki Foundation team - are all at home, doing our best to stay safe and looking forward to when we can hold the concert, all being well, in a few months time.

In the meantime, and we know it's small compensation, please enjoy some moments that capture the atmosphere at last year's concert. (Click on the image above to make it larger.) This is the encore performance of Leonard Cohen's Halleluya as rendered by Shai Abramson, young Naftali Weiss and the glorious Ramatayim Men's Choir.

See you soon!

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.

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.

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/