Posted on 08/17/2007 1:20:56 PM PDT by NYer
Every day, Nabil Ahmad goes to a little Catholic Church in Dier El Kamar, Lebanon, to pray. Nabil, who is 12, comes from a Syrian family of nonpracticing Muslims. So at first, the church was foreign to him.
But, he makes the trek there anyway because his 9-year-old brother, Karim, is suffering from a rare and horrific disease. Nabil says that he prays that God will make his little brother well.
It is the church of the Rev. Antonio Elfeghali, a Marionite priest who in July sent Karim and their mother, Ibtissam Ahmad, to the United States to see doctors.
The Ahmads are staying with Joe and Liz Zagar in Muskegon while doctors here try to figure out how to make Karim better.
For Nabil and his father, Younes Ahmad, 40, it is a lonely time.
They wait eagerly for Elfeghali to come racing to
the door because it means Karim is calling on the priest's cellular phone. Sometimes they can talk a long time because of international phone cards purcharsed by the Zagars through donations.
What's wrong?
Karim was 2 months old when his mother noticed the rash on his abdomen and around his back. She took him to doctors but no one knew what it was.
The rash was eating away Karim's skin and tissue, leaving areas raw and scabbed.
Karim's mother worked more hours cleaning to get more money for more doctors.
But the answer was always the same -- no one could explain the mysterious rashes.
The family was told it could be one of three or four skin diseases, all incurable and untreatable. One relative told them to just give the baby away.
The disease slowly has destroyed all of Karim's fingers. It is taking his toes. The bottoms of his feet sometimes look like charred beefsteak.
Then there is the pain. Always pain.
Elfalgahi, who was Liz Zagar's spiritual advisor at an Ava Maria Center in Ann Arbor a few years ago, was assigned to the church in his native Lebanon in 2005, but kept in touch with Zagar via e-mail and an Internet blog.
Elfalgahi wanted to find "the poorest people," and a Red Cross worker directed him to Karim.
He could not get the tiny boy out of his mind.
"I have met Lazarus," he wrote in his blog, referring to the Biblical figure given new life by Christ. "He lies at my gate."
Zagar offered to help.
She lined up doctors in Muskegon and Grand Haven who would look at the boy for free. She got Tom Powers to work with Mercy General Health Partners in securing free medications, supplies, tests and whatever else was needed.
She asked for public donations for airline tickets, visas, clothing and other expenses, and the public responded.
She and her husband, Joe, and their children Laura, 23; Sarah, 17; and Andy, 15, agreed to make Karim and his mother part of their family for "as long as it takes."
Ellen George Saqqa agreed to serve as the Arabic-English translator and interpret medical records for physicians and the hospital.
Saqqa, 33, first came to the United States from Kuwait when she was 2, seeking treatment for leukemia.
She was cured and is hoping for the same results for Karim.
Karim's Dream Team
A team of local doctors has volunteered to help Karim.
The team includes doctors Jason Van Ittersum, dermatology; Yosif Hamati, (Saqqa's uncle), orthopedic surgery; Stephen Fisher, plastic and reconstructive hand surgery; John Mullally, dentistry; Richard Golz, pediatrics; and Timothy Barron, ophthalmology.
One doctor said it is likely Karim will lose his toes. And doctors agree that if prosthetics, or surgeries to create fingers out of the bones in the hands, are even possible, those procedures likely will need to take place at a major medical center.
There are a host of problems associated with Karim's disease.
His eyes are dry because the lids are shrunken and do not close, requiring eyedrops every hour for the rest of his life. Without the drops, he would have gone blind, said Barron.
Karim also is severely anemic and has intestinal and dental problems. His entire body is inflamed.
When Van Ittersum first saw a picture of Karim on his computer screen, he remembered something he'd read about in his dermatology studies at the University of Michigan's medical schooll -- Olmsted's Syndrome.
It is distinct, he said, noting the pattern of scabs on Karim's face matched Olmsted's. Though it is not something that is studied -- especially since there is little or no information available -- it is not something a medical student forgets, he said.
Identified in 1927, there have been perhaps 40 cases worldwide in recorded medical history, Van Ittersem said.
Karim is perhaps one of a few people today who suffer from Olmsted's Syndrome.
Van Ittersum said no one knows what genetic glitch is responsible for the disease, which causes the skin to dry, shrink and die, suffocating tissues below it.
The syndrome attacks the groin, the face, elbows, knees, and midsection with a vengeance. Raw spots become infected. Pain rages. Itching is constant.
Van Ittersum is hoping to save Karim's feet so that when he leaves for home, he can walk to the airplane.
In many ways, Karim is a medical experiment and he is thankful for the doctors trying to help him.
When Karim leaves Van Ittersum's office, he says the doctor is "a good man. He helps me and it comes from his heart," Karim tells Saqqa.
Continuing the fight
Armed with preliminary evaluations from Muskegon doctors, Zagar, a substitute teacher at Wesley School, is looking for help from major medical centers.
Last week she sent a letter to the Mayo Clinic. She also has contacted Shriner's Hospital in Chicago.
But there are no resources.
The family is poor. There is nothing left to sell.
Just a boy
Karim loves Pepsi and chocolate ice cream and strawberry shortcake.
He is learning some English words. He is riding on bumper cars and going to the mall. Last week he asked if he could have some shoes, so Zagar got him roomy sandals and running shoes which he wore all day despite the pain.
"He eats like a teenager," Zagar said.
He loves baths and television and singing.
"Why are all these people doing this for us?" Karim's mother asks Zagar.
"Love," Zagar replies.
"Thank you," Ibtissam says.
Please continue to pray for Karim. Nothing short of a miracle will help this little boy. Thank you!
Mary Speaks to Karim and A Visit to the Plastic Surgeon
A Go-Cart Ride and a Singing Lesson (for Karim)
Ebtisam, Karim & Their American Friends (Give Praise to God Above All)
Karim's First Day in America (Prayers before statue of the Blessed Mother)
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