For Aster: Fenn Family Helps Change a Child's Life
Posted 10/13/2013 12:00AM
What connects Kathy Starensier’s class at Fenn and an Ethiopian teenager who just underwent surgery to remove a disfiguring birth deformity?
That would be fourth grader Michael Alpers, whose dad, Jim, played a major role in making it possible for Aster Degaro to have a normal life in which she could speak clearly, have fun with friends, and attend school in her village. Recently, Michael proudly showed his classmates a photo of Aster and her father, who in turn were holding a photo of Michael and his class.
Michael has a brother, Dininar, whom his family (Carol Jannetta and Jim) adopted from Ethiopia in 2009 through a Waltham-based organization, Wide Horizons for Children. Wide Horizons has established health-care facilities in underserved countries, and one of them is in the Sidama region of southern Ethiopia, where Jim, an anesthesiologist at Newton-Wellesley Hospital, has made humanitarian trips to provide health care. He traveled there with a small team in the fall of 2010. Comprised of two surgeons, a nurse, and a researcher, the team treated patients with large disfiguring goiters, a problem in the region due to a lack of iodized salt.
Enter Aster and her dad, Derebe, a subsistence farmer. Aster had a seven-pound tumor called a teratoma on her neck. Children in the U.S. born with such a tumor have it removed by the time they are two years old. But Aster’s village, like most of rural Ethiopia, has little access to medical care—the residents-to-doctor ratio is about 200,000 to one. As a result, she was shunned by other children and could not even attend school due to the stigma placed on her; the girl was, in fact, considered “bad luck” in her village.
The visiting medical group lacked the resources to help Aster and when she and her father left, their eyes, Jim says, were filled with tears. Aster’s case haunted Jim and led to a nearly three-year effort to solve the logistics of providing treatment for the girl. One thing the medical team could do is get a CT scan of Aster’s tumor. The team gave Derebe out-of-pocket money and had him take his daughter to Hawassa, the nearest city with the ability to perform such a test. Derebe and Aster came back with the scan, and the nurse on the team, Carrie Young, took it back with her to New York and showed it around to various doctors.
Jim went back to the remote hospital in the fall of 2011 to take care of more patients, having learned that a hospital, Mass Eye and Ear, had agreed to treat the girl. But, says Jim, “we had no infrastructure” to raise the money needed not only to treat Aster but also to fly her and her father to the States and to house them before and after her surgery. For now, armed with the knowledge that he could find someone to operate on her, he needed to find Aster. Jim showed a photo of her to patients in the Sidama hospital and one day a man ran outside and jumped on his motorcycle; he knew where they were.
Time went by as logistics remained an obstacle, but Jim did not give up. Finally, Carrie Young, the nurse on his team, found Dr. Thomas Romo, a cosmetic surgeon in New York City who with his wife, Diane, established The Little Babyface Foundation in 2002. The non-profit organization arranges to have world-class surgeons and medical providers provide the best corrective surgery to children in financial need all over the world, and it covers all related costs, relying completely on donations and contributions. They would arrange for Aster’s surgery.
Jim worked with Wide Horizons in Ethiopia to acquire travel passports and visas for the Degaros, who lacked even birth certificates. The time came for Aster and her father to leave for the U.S., but they missed their first two scheduled flights; first, the flight time confused them because the concept of time is different in their region; the second time, Aster found out that she needed a note saying it was safe for her to fly.
Finally, Aster and Derebe arrived in New York on August 30, and doctors performed surgery at Cohen Children’s Medical Center of New York to remove the tumor on September 11, which coincidentally is the day of Enkutatash, the Ethiopian New Year. A celebration of the end of the rainy season, it was a fitting date for a transformation that would allow the girl, once shunned by other villagers, to turn her face proudly to the sun.
The surgery was a success and after recuperating for the rest of the month, Aster and her dad got to explore a little of New York City before returning home on September 30. Jim and his family, including Michael, who would tell his Fenn class all about the experience, were there for the father and daughter’s last weekend in the States and their first look from atop a skyscraper—the Empire State Building.
Jim will continue his humanitarian work in Ethiopia and is planning to help raise money in Aster’s name for a clean water project in her village, where residents can spend the entire day walking to fetch water, he says. And Michael is planning to launch his own fundraising effort. Jim and Carol, who has been “very influential and supportive through all of this,” Jim says, have established a blog, firstname.lastname@example.org, which chronicles Aster’s experiences and, perhaps in the future, those of more children whom Jim can identify and help.
“I never thought I’d see this happen,” Jim says of Aster’s transformation, adding that the teenager is back home and doing well. “It’s amazing.”