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.)

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