Thursday, June 28, 2018

An unexpected inspiration

Jennifer Shaw Racz, the Malki Foundation's development specialist here in Jerusalem, writes:

Many times we set out with the intention to help another, and it turns out that they end up helping us in ways we never imagined.

This is exactly the experience I had in the past week during a visit with one of the families we help at the Malki Foundation. The purpose was to see, in real time, what happens with the money we raise.

It was here we met E, an inspiring mother who was kind enough to open her home to us during her son’s occupational therapy session.

E is a tall, elegant woman from Belgium who has lived and traveled all over the world. She lives with her five children and husband in a community near Jerusalem.

There is not a trace of downtroddeness or “miskena” about her. When we come into her bright, sunny apartment, there is a table set with a tablecloth, nice glasses, juice and cake. She urges us to sit down and eat and drink.

Her eight year-old son H is playing with his therapist on a large purple soft-play mat next in the living room.

E is currently pregnant and sits calmly in her chair explaining all that she has done for H. He suffers from developmental and physical disabilities and severe epilepsy. I can only imagine the hell she’s been through watching her son lose his ability to walk, talk, and even move after a series of seizures, lasting for a few years, wreaked havoc with his brain.

The seizures were so bad and so frequent that they left his feet permanently curled inward which means that in order to walk again he will need surgery.

And then I watch with tears in my eyes as H moves around on his knees, playing with his therapist, grabbing toys and throwing balls, and smiling the whole time.

And there sits E, with her pregnant belly and her 5 year-old daughter hugging her lap, calmly remembering how bad it was and silently glowing about the progress her sweet son has made.

Of course, it hasn’t been easy.

She has had to fight to choose the therapists she wanted - as opposed to those that the government wanted to send. It took her three years of battling with Bituach Leumi (the National Insurance Institute of Israel - essentially the national social security authority) to get the subsidies her son deserves by law.

They are currently working with a lawyer to fight a Health Ministry policy that, if put in place, would eliminate the sale of the strain of medical cannabis that was responsible for stopping H’s seizures and allowing him to come back to the happy, active state we witnessed during our visit.

And on and on she goes, with a grounded, sincere countenance, listing all of the things she has done to help her son and her family live their life in health in happiness. I don’t hear anger. I hear calmness, purpose, acceptance and love.

As E speaks, I soak in all she has to say. She has so much wisdom inside of her. Wisdom that comes from a clear purpose, in addition to sleepless nights, endless phone calls and emails with bureaucrats, and Gd knows how many consultations with doctors, therapists, alternative medicine practitioners, and reading through advice on Whatsapp support groups.

We joke with her – you should write a guidebook for other parents. And she answers back – I don’t have time now. The time I have is for my children.

When I get home, I find that the qualities she exuded have seeped into my own being. I find that I am more calm, more understanding, more compassionate with my own daughter, even after a long day and the beginnings of a headache. I am more secure in my ability to give her what she needs, and more settled with my decision to work part time so that I can spend more time with her.

E has awakened the inherent parent in me.

After this experience, it is foremost in my mind how incredibly linked the parent and the child are to each other; that one’s success is very much tied to the strength of the other. It’s not just about the child’s progress, it is also about the dedication of the parent in believing in and fighting for what’s best for him and their family.

When we set out for the visit, we thought it was to observe how paramedical therapies can help a child progress in his development. By the end of the visit it became clear that we were witnessing the power of the parent who believes in the potential of their child, and whose enduring dedication and love brings her child back to life.

[A version of this post appears on the Malki Foundation website under the title "The parent who changed my life"."

Wednesday, June 13, 2018

Alternative communications?

Jennifer Shaw Racz, the Malki Foundation's development specialist here in Jerusalem, writes:

This week we had the opportunity and pleasure to meet with Debbie Ben-Tal to discuss the possibility of collaborating with the Karten Network to bring specific Augmentative and Alternative Communications (AAC) devices to Israel.

These are devices that help children and adults with speech issues communicate with the world around them.

Examples include eye-activated boards or iPads/tablets. 

The Karten Network is a charity based in the UK which supports organizations working with people with disabilities, specifically using technology. 

It was a very informative meeting and we were very impressed by Debbie's commitment to helping adults and children communicate with the world around them in addition to her time-management skills! 

Thank you Debbie and the Karten Network for your insights into speech therapy and AAC in Israel.

Monday, June 11, 2018

After a lost wallet was returned to its owner by a stranger

Dear stranger whose name we don't know and who found a lost and fully-loaded wallet and returned it to its owner completely intact a few days ago:

Because of YOU, a dedicated supporter of the Malki Foundation, the owner of the wallet that got lost, "paid it forward" and made a donation to the Malki Foundation to honor your act of kindness and to help women and children which accorded with your request.

Because of YOU, a small, hard-working staff in the Malki Foundation office had the pleasure of being given the praise and motivation they always appreciate by receiving a donation without even asking for one.

Because of YOU, a child with disabilities will receive additional therapies which will help her learn to eat, crawl, communicate and even walk.

Because of YOU, a parent will breathe a little easier tonight knowing she is able to watch her child sleep in his bed at home and provide him with the therapy he needs to succeed.

From all of us, wherever you are: thank YOU. YOU have made a difference.

Tuesday, June 5, 2018

Yossi's mother shares some great news with us

From Yossi's mother (his name is not Yossi - see the last paragraph
of the post)
Jennifer Shaw Racz, the Malki Foundation's development specialist here in Jerusalem, writes:

Today we arrived at our office to find - as we often do - a heartwarming thank you note from a parent whose child participates in our Therapies at Home program (TAH). 

Here's what the mother wrote.
Before Yossi began therapy, he would lie on his back 24x7, unable to turn his head or move his hands around properly or roll from side to side! He couldn't even hold up his head.  
After 4 months of physiotherapy, he has surpassed everyone's expectations in this short period of time, showing us he has so much potential. 
I now have a happy, sociable baby who rolls over from front to back, holds his head up, claps his hands... puts his hand on his head when you say "hands on your head!" ...He is now starting to move into crawling position too.
A reminder that the Malki Foundation's therapy programs have enabled many 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.)

Wednesday, May 30, 2018

From our files | Getting Yoav back at sea

See the last paragraph of the article
We received a call a few weeks ago in the Malki Foundation office in Jerusalem from Rachel, a social worker at the ONN School, a special education institution in the Tel Aviv suburb of Zahala.

She had heard about the Malki Foundation's work after one of the school's staff members made a presentation about Malki and the Foundation in honor of Yom Hazikaron (Israel's Memorial Day). Now she was calling urgently to get help for Yoav, a student at the school who was in great need. 

“His father is collapsing from the financial and emotional strain,” she said. Yoav is 16 years old and lives with his father in Tel Aviv. He is an avid sailor and loves music. He even won a prize in a sailing competition last year. 

When he was 4 years old, Yoav's parents realized he was falling a lot. He seemed to lack the strength they saw in other children his age. The diagnosis they got was Duchenne Muscular Dystrophy (DMD), a genetic disorder characterized by progressive muscle degeneration and weakness. 

Because the DMD affects all the muscles in Yoav’s body, he has been using a motorized wheelchair since he was 8 years old. The DMD also affects his lungs, which has led to problems with his breathing; his lungs fill up with mucus and he needs to use a special machine in the mornings and at night to remove it and help him breathe.

Yoav was born in Israel to French parents. After the diagnosis, Rachel explained, the government offices who were supposed to be providing for his health and general welfare refused to grant him any treatments. Their argument: “Until he is in a wheelchair, we can’t recognize his disability and therefore cannot provide care”. 

Still able to walk at that point in his life, Yoav did not qualify for the care he needed and his parents felt they had no choice but to bring him back to France where he lived with his mother from age 6 to 14. During those years, he attended a special education school in Paris. 

Throughout those years, the father, living in Israel, traveled back and forth to visit him. By age 14, antisemitic bullying in the school got to be too much and his father brought him back to Israel to live. Since then, he has been attending the Onn School.

Physical therapy is essential so that Yoav’s lungs function better and to prevent the accumulation of phlegm. But the twice-a-week physical therapy he gets at school is simply not enough to meet those critical needs. The result is that Yoav has been in and out of hospital with bouts of pneumonia and additional respiratory issues. He lacks an appetite and, as a result, is significantly underweight. He also suffers from iron deficiency and the problems that this brings on.

Rachel explained that the bills for therapies, medications and hospitalization expenses have been and continue to be financially debilitating for Yoav's father. He doesn't know where to turn for help. 

Rachel’s call to us started the process of an expedited application for our Therapies at Home program (TAH). The Malki Foundation acceptance committee understood the urgency and Yoav got our approval for additional physiotherapy therapies (funded by the Malki Foundation program and delivered by the family's choice of therapist) within days.

The additional physiotherapy sessions that the Therapies at Home program makes possible are already lightening the load that has been sitting so heavily on the shoulders of Yoav’s father. Everyone in this story hopes they will help to avoid the need for more hospital visits for Yoav. And that he will find it easier to do the things normal teenagers want to do – listen to music, socialize with friends, and - in Yoav’s case - sail on the Mediterranean.

We hope to be able to report on his progress in the near future.

A reminder that the Malki Foundation's therapy programs have enabled many 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.)

Wednesday, May 23, 2018

What happened after the seizures

Last year's Malki Foundation article about Chaim (but Chaim
is not his real name, and this picture does not show him or his mother)
When we last wrote about 8 year-old Chaim [here], he was unable to move after a series of seizures left him incapacitated. Life has never been free of challenges for this beautiful child who was born with Cerebral Palsy, autism and epilepsy. 

This week, Chaim's mother called the Malki Foundation office in Jerusalem. She sounded - in the words one of our staff members - ecstatic. She told us about his extraordinary progress.  

After almost a year of intensive therapy through the Malki Foundation's Therapies at Home program, Chaim's mother said he is now able to hold a bottle in his hands and drink unaided. He is also crawling. What's more, she said, with the help of a walker, Chaim is now even able to take a few steps. The future is looking a lot better!

We are all so happy to hear about Chaim's progress. We would like to thank our donors for making this happen. You provided the funding for the paramedical therapies that are bringing back Chaim's independence to him. Those, and the love and constant devotion of his family.

A reminder that the Malki Foundation's therapy programs have enabled many 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 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.)

Thursday, May 17, 2018

From our files | Two-year-old Ido and his challenges

A representative image; this is not Ido and Ido is not the real
name of the child profiled in this report
Ido was born with serious development delays, with birth defects and with respiratory difficulties.

Now a smiley, friendly two-year-old boy, he lives with his parents and three siblings in Israel's northern-most coastal city, Nahariya.

Because of digestion and motor issues, Ido must eat only pureed foods and in small amounts. He has to be woken twice each night to eat so that his nutritional requirements are met. 

His breathing is aided by a tracheotomy tube like the one you see in the photo above.

Starting in September 2017, Ido has been getting speech therapy and physiotherapy at home through the Malki Foundation's Therapies at Home program. The physiotherapist, selected always by his parents as a matter of our policy, is focusing on helping him sit up straight (did we mention he is grappling with scoliosis?), improve his movement by enhancing his crawling skills, and advancing his ability to play and to communicate.

Ido’s mother called the Malki Foundation office in Jerusalem recently to say thank you. She mentioned how he has begun crawling, and now says a few words. When Ido first said “Abba” (daddy in Hebrew), the family encountered a deeply emotional moment. 

Ido's mother told us that the support her family gets from the Malki Foundation does more than simply enable therapy sessions that would otherwise put a great strain on the family's already-stretched resources. It gives her the physical, mental and - yes - economic strength to help her son through the multiple challenges he faces daily on the road to eventual greater independence.

The Malki Foundation's therapy programs have enabled many 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 whom they love. 

(Though the facts and figures are always true and correct, 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.)