Our Love. Their Courage. A Donald Berman Center
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A Revolution for Chemmie

ChemmieWhen four-year-old Chemmie--a sweet, blond-haired boy with a ready smile—entered Meshi three years ago, he could only lie on the floor. Stricken at birth by “Joubert Syndrome,” a rare neurological disorder that severely affects balance, muscle control and cognitive ability, Chemmie could do little more than cry. He could barely move his limbs, and couldn’t eat independently, connect to his surroundings, or make eye contact. Yet afterenormouslypainstaking, intensive therapyand care by Meshi’s staff, this year Chemmie has come alive before their eyes-- revealing his fun-loving, happy nature, despite terribly harsh physical handicaps.

“It’s a revolution,” declared Chemmie’s kindergarten teacher Sarah Tourk. “He can finally understand us! When we say, ‘Raise your hands,’ he does!” she exclaimed. “It took us two full years to teach him to sit without falling. Then we tried for a year to teach him how to use the pedals on our special bicycle, but he didn’t understand---until this week, when he finally grasped what to do. Now we can’t keep him off the bike! By the end of the year, we’re now hoping that he’ll ride independently,” she said.“He’s also just begun to speak--his first two words are ‘I’ and ‘more’—and he’s starting to interact with his classmates.We can’t describe how excited the Meshi staff is to watch Chemmie take truly giant steps.”

For Chemmie’sparents, who immigrated to Israel from England, Meshi’s devotion to their son has been a lifesaver. “By the time we first reached Meshi,” recalls his mother Natalie, “we were exhausted. Our baby screamed and cried throughout the day, and couldn’t sleep at night.  He wasn’t eating, he couldn’t sit, and he suffered from frequent ear infections and strep throat. Chemmie needed such a large number of therapies that we ran from place to place every day, and hardly had time for our older child or ourselves. Meshi was an absolute blessing. They received Chemmie with open arms, not just to give us a respite, but to do everything in their power to get him walking, talking, eating and more.  Our nightmares started to ease, and eventually our son began to sleep as well!”

GIVING HIM EVERY OPPORTUNITY TO ADVANCE

Watching Chemmie squeal with delight as he held a slippery snakeduring his Animal Therapy session, teacher Sarah Tourk recalled how much he used to cry. “It was heartbreaking to know he was in physical or emotional pain, but we couldn’t break through to him. We worked closely with physicians to treat his hearing and sight problems, and now hisear tubes and new glasses have made himmuch happier. The heart of our work, however, is the integrated, intensive program ofphysical, occupational and speech therapywe designed from the start to help Chemmie to reach his potential. Once completely helpless, he can now sit up, walk with a walker, and move from a chair to the table. We can’t really know the extent to which the condition will affect his development, but we are trying with a passion to give him every opportunity to advance.  And just now, we know that he’s working right along with us.” 

Along with his breakthroughs in therapy, Chemmie’s personality is beginning to emerge at last. “From the passive child we knew, there’s now a boy who laughs a lot, who loves the kids in his class, can’t wait to play outside, and has the patience and stamina to stack together large ‘Lego’ pieces,” Sarah Tourk reports. “But now he wants what the other children want, and he doesn’t let too much get past him. He’s a full-fledged kid!”

Sarah, who has been teaching for over three decades, cannot hide her zeal for her work. “There’s no words to express the satisfaction I get from seeing a child such as Chemmie advance. Most places would have given up on him, but at Meshi we’ve focused all our efforts on helping him. Everything he’s gained is a wonder in itself, and he feels our joy at his every accomplishment. He has a long, long road ahead, and my heart goes out to his young parents for the overwhelming burden they carry. But each step we can bring Chemmie closer to independence is a gift we can give to him and his family for life.”

 

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