Petero – Uganda
Petero Byakatonda: A Journey of Hope
“Once all struggle is grasped, miracles are possible.”
– Mao Tse-Tung
“I forget them,” says 10-year-old Petero Byakatonda resolutely in his broken English. When asked he how feels about the children in his distant African village who made fun of him endlessly before his trip to the United States, he responds, again, “I forget them.”
Petero Byakatonda’s journey has been a difficult and remarkable. The young boy and his family have endured a series of seemingly insurmountable challenges that have spanned countries, continents, hemispheres and years. Yet, Petero, his family, and the loyal caretakers who surround him have never let the ridicule, fear or dire predictions deter their efforts to find a solution.
Born in a small, remote village in the southern-most region of Uganda and the oldest of six children, Petero entered the world with a rare collection of facial and other physical abnormalities known as Crouzon’s Syndrome. Upon arrival in Texas, he had lost most of is eyesight and could hardly hold up his heavy, cone-shaped head.
Petero’s family had been searching for an answer since his birth. Since the only hospital was miles and miles away and they had no transportation, the Byakatondas were faced with the societal expectation that they lock him away from view – not letting him out to play, see others or have a life. For Petero’s parents, this option was unacceptable. They began their avid quest with a local herbalist, who offered traditional healings. The practitioner sacrificed two hens and completed the therapeutic ritual by anointing Petero’s malformed head with the blood of the fowl. He pronounced that the cure would be complete in one year. They need only be patient and wait. But the year passed, and Petero’s condition had deteriorated. The distortion of his head and face had worsened.
They sought out a different healer in another village; however, when he saw Petero’s unusual silhouette in the shadow of his hut’s doorway, he cried, “Bad omen; bad omen! Do not enter this place. Do not enter this shrine. Go away!”
Disappointed and heartbroken, again, Petero and his parents returned to their village to wait. But they never stopped seeking, never stopped asking and never stopped hoping. That’s why their faith was suddenly renewed with they discovered their acquaintances in a neighboring village had a daughter who was a nun working in a small charity hospital and rehabilitation center in the region. The couple told their daughter of the child in need, and she felt he could be helped at the hospital.
Though the hospital was hundreds of miles away, they believed this might be Petero’s last chance for help. Friends transported the family to the distant hospital, where they met Dr Andrew Hodges, a physician from England who had committed his life to providing health care and reconstructive plastic surgery to those without any access. Though he did not have skills, facilities, or tools to help Petero there, he had heard of
Dr. Kenneth Salyer and his specialized work in craniofacial surgery. After a phone call from Dr. Hodges to Dr. Salyer, plans were immediately set in motion with the Ugandan hospital and the World Craniofacial Foundation to transport Petero for care. Finally, after ten years of undaunted belief and tireless investigation, Petero was on his was to health –and hope.
However, his mother and father felt ill equipped to accompany him. They spoke only Lugana and knew absolutely no English. They also felt they would not be able to navigate the logistics of the sophisticated American culture. Dr. Hodges could not leave the facility, so barriers to Petero’s cure began to mount, once again. Fiercely committed to Petero and his positive outcome, Dr. Hodges began looking for possible chaperones. Several came forward to take on the task, but they commanded exorbitant fees — beyond the means of the family, hospital or the WCF. He continued his pursuit of a qualified volunteer who could commit to the six- month stint in Texas and to providing constant, nurturing care for Petero throughout his treatment and surgery. When he thought all resources had been exhausted, a candidate appeared. Her name was Immaculate, and she had just completed an employment contract at the hospital. She was looking for her next assignment. She spoke perfect English, because she had followed the mandatory course of study in school, and her sense of adventure made her affirmative decision very easy.
Since their arrival on January 26, 2006, Immaculate has been Petero’s constant companion, confidant, pal and advocate. Articulate, charming and innately spunky, Immaculate’s flawless, onyx skin is as striking as the radiant twinkle in her eye and her zest for life. She clearly loves Petero as her own and is almost giddy when she looks at the new Petero — now post-surgery. He wears what is known as a halo to hold his newly formed head in place; however, it looks more like a complex web of metal or a scaffolding to support the creation of his new face and life.
Still, Petero often surprises himself when faced with the reality of his dramatic transformation. Immaculate tells of showing him pictures taken of him since the surgery. As he reviewed the shots to select some to send home, he pointed to his new face and asked, “Who is that?” Immaculate responded, “It’s you.” Petero looked perplexed, then took a closer look and responded, “No, no.”
Immaculate urged, “Look again; you’ll see.”
He took a breath, and his eyes widened. “I’m so different, now,” he whispered softly. “I’ve really, really changed.”
“YES,” shrieked Immaculate. “He knows now; he knows now,” she claimed. “He really knows now.”
After a quick, final surgery to position his right eye and remove the halo, Petero will return to his home, his family and his native Ugandan village to face those who once shunned and tormented him. Though he looks forward to showing off his new appearance, he must also face a world without the comfortable, modern conveniences of the U.S., to which he has grown very accustomed – namely, electric washers and dryers, video games, a full array of toys, three meals a day and, of course, pizza. They also say they will miss the people they have come to know in Texas — their warmth, kindness, and incredible generosity.
One thing Immaculate confesses she will not miss is the summer heat of Dallas and the cold winters. In fact, she observes that Dallas actually feels much hotter than her native land near the Equator in Africa’s tropical zone. “I guess it’s the humidity,” she chuckles, “but it just feels so congested here. There are breezes that cool us at home.”
Immaculate is uncertain about her own future upon her return to Uganda, but she does know she will always be a part of Petero’s life. I told her he was certainly blessed to have her. She retorted, “I am blessed to have him; we are blessed to have each other.” Their inspiring faith has certainly cushioned and bolstered them throughout their unusual expedition.
Nowhere else is this more apparent than in an intimate moment captured as part of the recent filming of a Discovery Channel documentary on Petero’s triumph. As we see Petero wheeled on his gurney being into the operating room, we hear him singing a gentle, little song in his native Lugana. I asked Immaculate to translate the sweet words, and she said, “He is singing his favorite song:”
God, we have come in front of you. Please bless us and keep us.God we have come in front of you. Please bless us and keep us.
More from Petero Byatakonda’s Story:
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“Petero’s Homecoming“, Dr. Salyer describes the joyous reunion of Petero and his family.
