Mathew has a very rare form of Marfan Syndrome, a disease that affects the body's connective tissue -- and consequently practically every organ in Mathew's body -- except his extraordinary mind. It is usually passed down from parents, but in Mathew's case, it was a spontaneous genetic mutation. When he was born, doctors told his mother, Carol, that Mathew probably wouldn't live. But he has lived longer than most of those who have Marfan Syndrome and has become part of a UCLA study. But his life as been anything but easy. Already he has had two heart operations. In any given week he could go into the doctor three or four times. He lives under a terrible cloud -- the possibility that his aorta could swell and burst at any time. Carol, his mom, is on call 24 hours a day. And on Rosh Hashanah this year, Mathew ended up in Children's Hospital for 10 days.
When Mathew was well enough to do some school work, he wrote the essay about his experience for his teacher, Mrs. Illig. She said it was the best personal essay she'd ever read. But this wasn't the only writing Mathew had done. When the Starlight Children's Foundation granted him his wish for a laptop computer, he whipped out a story called "Monstress Mayhem," about a boy with special powers who confronts an evil queen and an army of dragons in a land called GinGin. Mathew finished the 155-page story before he had finished the sixth grade. The tale was even picked up by a production company after Mathew was featured in an L.A. Times article.
Lately Mathew hasn't been able to write much because he has been too ill. "That's one of the things that's very depressing to him," his mother says. "Writing was his way of handling his energies." But last summer, Phyllis Folb, director of marketing and communications at Starlight (and former head of PR at the Jewish Federation) asked Mathew to make a Chanukah card for the organization, which grants wishes to seriously ill children. Mathew drew the card on his computer, hand-colored it and wrote this inscription inside: "May a piece of the magic stay with you every day of the year." He quizzed Dr. Michael Joseph, his UCLA pain management doctor, on the card's meaning. Joseph, like many of Mathew's physicians is Jewish and understood immediately. The star of David surrounded by shards of color spreading in all directions represented the special quality of Chanukah. The beautiful multihued stained glass was the holiday joy that people could carry away with them. The Magen David alone remained unbroken.
The star may also be a symbol of Mathew, a brave 12-year-old who won't let pain defeat him. To purchase Mathew's card or other Starlight holiday cards, call (877) 316-STAR (7827).
-- Ruth Stroud, Staff Writer
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