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. (Not his real name and 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!

Sunday, January 5, 2020

A look back at a busy and fruitful year

We work hard all year round at the Malki Foundation so that we can support - in the most practical of ways - the wonderful families who fight to get their children-with-very-special-needs the very best of paramedical care while ensuring the family remains intact.

Intact in this sense means that so long as they want and are able, their special-needs child is able to keep living in the loving environment of the family. That, along with empowering those families in other ways as well, is the essence of our mission.

Everyone's busy, so here's a 90-second summary of how this past year looks to us in management terms.

Enjoy! And feel proud!

Comments, responses and questions are all welcome.

Sunday, December 29, 2019

Muscles, strength and dedication

Bracha Chaya is a smiley girl of five and half.

A congenital, hereditary and rare neuromuscular disorder called Nemaline Myopathy is the cause of the significant general muscle weakness which challenges her in life.

Bracha's parents realised from the very start that her best chance for progress would involve intensive para-medical therapies. So they started her on  course of therapies appropriate to a new-born from when she was just three weeks old. 

And they have kept on working hard ever since.

Whatever therapies Bracha received at kindergarten, her parents took care to ensure she received more at home. 

The results are amazing. 

Today, Bracha walks independently and has started to speak.

In Bracha's own hand and words
She still has problems with her swallowing and is fed mainly by PEG so this is the focus of treatment for the year ahead.

Bracha herself recently wrote us this lovely thank you note (right). With it, her family attached some photos and asked us to share them. 

Bracha's mother told us she especilly wanted to raise awareness (in her words) of how important the help the family gets from the Malki Foundation is. 

That support, thanks to the generous backing of the donors who make our work possible, is what enables Bracha to receive the benefit of specialist therapeutic intervention in the friendly and convenient environment of the family home.

The blessed results are there for all to see.

Thursday, December 5, 2019

The unique challenges of Israel's periphery communities

Ahmad: He's mentioned below
Earlier this week, Israel's parliament, the Knesset, held an important conference under the title "Periphery at the Center". Some 500 participants attended including government officials, domain experts, mayors, local council heads, journalists, academics and Members of Knesset.

The event focused on the challenges facing Israel's outlying areas - the periphery communities located relatively far from Israel's centers of population in Jerusalem, Tel Aviv, Haifa and the Coastal Plain.

According to a Knesset report [here], the subjects under discussion included economic and social resilience, employment and economic development, personal security, education, culture, art and aspects connected to how the periphery communities are represented in the media.

"In Israel there are 257 local authorities, and 200 of them are dependent on the government's support," Ministry of the Interior Director-General Mordechai Cohen said at the opening. "The heads of local councils go from ministry to ministry and beg for alms! We need to think outside the box."

Data presented by the Central Bureau of Statistics showed that communities in the periphery have the highest percentage of smokers and people who are overweight. And the lowest percentage of people who exercise.

Among some of the other worrying data points presented to attendees:
  • In the periphery, 30.9 out of 100,000 people are killed in road accidents, compared with 18.6 in central Israel communities.
  • About a quarter of the residents of periphery communities simply give up on getting medical treatment because of distance factors.
  • 54% of residents travel great distances to receive medical care
  • A third of periphery residents are unhappy with the state of available health services
At the Malki Foundation, we are only too aware of the challenges and the failures that follow. We are proud of our Therapists on Wheels program which for years has made a valued, straightforward and relatively simple contribution to allieviating some of the periphery's problems.

Ahmad Mutlaq is one of the talented and dedicated physiotherapists who works in our program. He travels to the homes of children with disabilities in the South in order to deliver in-home, and much needed, therapy service. Read more on our website about Ahmad and the children he treats ["Bringing therapy to children in the south"].