Wish Book: San Jose mother seeks treatment for son with cerebral palsy
By Karen de Sákdesa@mercurynews.com
from the Mercry News - Originally Posted: 12/20/2013
SAN JOSE -- She's trekked to three continents in pursuit of care for her 10-year-old son Aaron. But still, Senait Abraha is not done searching.
Now, the single mom working two jobs has set her sights on Los Angeles, where her 35-pound boy who can't walk or talk and suffers from cerebral palsy could receive intensive therapy she only dreams of affording.
Then again, there's always a way. That much, Abraha's friends and family have learned. They've watched her fight her way out of a sorely lacking maternity ward in Asmara, Eritrea, to the Chinese city of Dalian, and now San Jose.
She has fought, at times, with just a few dollars to her name. All in search of treatment for Aaron, whose condition is complicated by some blindness and daily seizures. Donations from Wish Book readers can help Abraha with her search.
Senait Abraha greets her son Aaron Khan after his swim therapy session with Julia Gonzalez, a kinesiology student from San Jose State University at the
Senait Abraha greets her son Aaron Khan after his swim therapy session with Julia Gonzalez, a kinesiology student from San Jose State University at the Timpany Center in San Jose, Calif., on Tuesday, Nov. 5, 2013. (Karl Mondon, Bay Area News Group)
Caring for Aaron involves strapping and unstrapping his clenched hands and feet from gloves and boots secured with Velcro; hoisting him in and out of his specially equipped, padded wheelchair; and inserting a feeding tube into his belly. Then there are the mother-son "wrestling matches," nightly story times, and a recent adventure in hair-cutting, when the pair had perhaps a bit too much fun crafting Aaron's silky black curls into a mohawk.
"What's so amazing about her is she always manages to take care of Aaron with so much joy. She never treats him as a burden -- no matter how difficult it becomes," said Abraha's friend, Santa Cruz area singer-songwriter Bonny Getz. "Of course, she gets sad and she would love for him to say 'Mommy!' That's a huge dream, and it's why therapy is so hopeful. But it's ridiculously expensive, and not covered by insurance."
High costs and other obstacles rarely deter the 38-year-old Abraha. That became clear shortly after the Ethiopian-born mother -- a University of Asmara graduate who speaks Tigrinya, Amharic and English -- gave birth in 2003. Baby Aaron kept turning pink. Something wasn't right. And before she could even heal from childbirth, he was back in the hospital, comatose.
"I was planning his funeral," Abraha said in an interview outside San Jose's Martin Luther King Jr. library where she studied to be a licensed court interpreter. "I was so sad and depressed and the doctors wouldn't tell me anything. They just kept saying, 'He's sick.' "
And then, somehow, 10 days later Aaron emerged from the coma.
Abraha's family celebrated with a traditional welcome-home feast of yogurt and ga'at porridge with spiced butter. Admirers streamed in and out of the house, but Abraha became increasingly distraught. She couldn't shake her gnawing unease: "Why did it happen? Why did he go into a coma?"
In Asmara, she found no answers. A CT scan was recommended, but the one machine was broken. Loved ones counseled her to leave things to God.
But Abraha refused to let go. So she wrote to her former employer, Estrid Hessellund, who worked in Eritrea for the nongovernmental organization Norwegian Church Aid. Hessellund was so impressed with "the strong character of Senait to struggle for life for the boy and herself," she said in an email, that she quickly raised the money to fly the mother and child to China. A relative working there believed Chinese doctors could give Aaron, then 4 months old, the diagnosis and treatment he desperately needed.
After one day in Dalian, Abraha learned through a Mandarin-English translator that Aaron appeared to have a severe form of cerebral palsy. The doctor warned her he might never walk or talk.
Living with that diagnosis became almost as unbearable as the not-knowing. Back home, Abraha's confidence began to crack. She saw no life for her son in East Africa.
"In Eritrea, you hide such kids," she said. She saw no possibility of services, therapy or schooling. "He would just be at home lying in bed babbling, and people would come and pity him. I did not want that for my son -- he would not have a life at all."
It took about a year for Abraha to pull off her next move, on the advice of a close friend: a U.S. green card lottery, which she won, a month after entering.
Since then, the family has lived for the past six years in San Jose, where Aaron attends the Anne Darling special education elementary school.
On a recent evening, he was home from school cracking up with his mom as she prepared him for swim therapy at the Timpany Center. Twice a week, San Jose State University student interns wheel Aaron into a warm pool where he lounges blissfully on a broad, red life vest. As his normally cramped limbs fall gently to his sides, it's as if he's suspended in air.
Abraha believes more varied therapies could help Aaron progress, and live with greater comfort. She hopes to travel with Aaron to the NAPA Center in Los Angeles for a series of at least four three-week intensive sessions of customized physical and neurological therapy.
His grandfather Mesfin Mehari agrees. In 2008, Mehari spent a month in Nairobi, Kenya, with his grandson strapped to his chest in a sling as they waited for travel documents so the boy could join his mother in the U.S. Kenyans laughed openly at the unusual sight, Mehari recalled. But the embassy staff was moved, and they convinced Mehari to get a visa as well.
Now living in the South Bay, he is building Aaron a wooden trolley, and marveling at his small but monumental advances. In the past year, Aaron has begun lying more comfortably on his belly. He's learned to love the shower, his family said, instead of screaming and crying in the water. Secured in his "reading chair," he gleefully watches "SpongeBob SquarePants," and this summer enjoyed his first camping trip. Abraha said they also have a new system of communicating -- Aaron moves his right hand for yes, and left hand for no.
"Aaron communicates with you in his own way," said Catherine Ford, of Los Gatos, a senior program manager who is part of Abraha's women's support group. "It's really an inspiration to be around them and to know that the human spirit can't be contained. He's got the right mom, and she's got the right son, and each has got the best teachers. Their life is beautiful to see."
Comments about Wish Book stories? Email wishbook@mercurynews.com or call coordinator Leigh Poitinger at 408-920-5972. "Like" our page at Facebook.com/mercurynews.wishbook.
HOW TO HELP
Readers can help Senait Abraha take her son, Aaron, to a series of intensive three-week therapy programs in Los Angeles. Each session is $6,400, plus travel costs. Donations of any amount will help their goal of attending at least four sessions in a year. Donate to Wish Book at www.mercurynews.info/wishbook or clip the coupon.
