Tuesday, October 21, 2014

From our case files: Sleepless nights, much brighter days

Therapist stretching spastic limbs
Like many other parents of a severely disabled special-needs child, CM knows how to appreciate a good night's sleep. It is something she used to rarely get.

She's the mother of a child born with severe cerebral palsy. In this post, we will call him Yaakov which, for reasons readers will appreciate, is not his name. Yaakov does not sleep well either. As CM told us recently, he would wake in the middle of the night for years: three, four and sometimes more times each night. These were dramatic interruptions to the peace of the night in which he would scream aloud for his mother. She would, naturally, rush to his bedside whatever the hour and do what she could to massage away the pain of her little son's stiff and afflicted body.

The births of CM's three older children all went smoothly. Yaakov's however was grueling and traumatic. She began bleeding toward the end of the pregnancy, and eventually was in labor for 32 hours. She pleaded to be allowed to have a Caesarean section but the doctors did not agree. They tried a vacuum device to assist in the delivery, and after several attempts, she finally gave birth.
The baby emerged "completely black, without a pulse and wasn't breathing", CM recalls. He was rushed into intensive care and she and her husband frantically awaited the doctor’s prognosis and diagnosis.

It emerged that in addition to cerebral palsy, Yaakov is challenged by epilepsy and severe retardation. He has already undergone seven surgical operations and is confined to a wheelchair. Not surprisingly, he needs assistance in taking care of his basic needs.

Like many parents in such situations, CM embarked on a battle with her health fund. She insisted on her son's right to get the physiotherapy sessions so vital to Yaakov's well-being. She produced the requisite documentation from the doctors, and invested considerable efforts that exhausted her energies and her time. And in the end, her claim was rejected. (This is not as unusual an outcome as many readers probably think.)

CM had been working as an administrator in a government office up until Yaakov was born. She felt she had to make the decision to leave her job and focus on her child's needs, once the extent of his disabilities were known, Pretty soon, it became clear that Yaakov would need intensive physical therapy. But the family’s income had undergone a drastic reduction via the loss of her salary. Paying for private therapy sessions was simply beyond their means.

CM was determined to find an answer for her son. Eventually, someone mentioned the Malki Foundation to her, and she got on the phone. After a quick and efficient application process, the family was notified of the approval and the extra funding required to cover most of the costs of Yaakov's therapy sessions was approved.

In February 2013, a therapist by the name of Eran began making weekly visits to Yaakov at home. in their community. Those physical therapy sessions are largely funded through Keren Malki’s Therapies at Home program. Yaakov was eight years old when their work together began.

“I simply could not have afforded it otherwise,” she says. “You can’t imagine the relief my husband and I felt when Keren Malki said yes.”

Eran's focus was on helping the youngster strengthen his muscles and overcome their spasticity to increase the boys degree of comfort. Today, thanks in large measure to the therapy sessions made possible by the Malki Foundation's support, Yaakov's nights are much more comfortable. He sleeps much better, often getting through an entire night's sleep without interruption.

Says his mother: "I have much more energy. This has changed the lives of all of us for the better.”

Each week, CM watches intently as Eran works with Yaakov, observing all of the exercises he does, so that she can practice them on her son between sessions. Over the past few months, Yaakov has improved so much that he can stand for longer periods of time with the help of his walker. “He’s also much calmer now and not in as much pain,” she says. “He’s so full of happiness.”

Though she acknowledges that Yaakov has brought unexpected challenges into her life, she is emphatic that raising him has been a special Divine gift.

“I thank G-d that He gave me the merit to bring this child into the world. I received a tremendous present. This child has brought more light to my life. He’s a child who makes connections. When he laughs, he gives back lots of love."

CM says the Malki Foundation's intervention has dramatically improved the quality of life for her son and for the whole family.

"I am so touched by the Keren Malki team’s compassion,” she says. “They let us, as parents, be better people and develop. I’m so grateful to have merited coming to know such an organization.

“There are a lot of people who need the kind of assistance that the Malki Foundation provides. Please let everyone know that if they support this organization, they are making a tremendous contribution. Without Keren Malki’s support, I could never have coped.”

(Fern Allen interviewed the family, and wrote an article for the Malki Foundation newsletter which served as the basis for this post. People's names have been disguised in this article for obvious reasons. The illustration bears no relation to the people involved.)

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