“Hydrocephalus treatment study began in Uganda” from Research News at Vanderbilt University
Our CUREkids Coordinators are CURE’s eyes and ears on the ground in our hospitals. They not only file photos and updates on each CUREkid but also act as Correspondents, giving us a glimpse of life at the CURE hospital and in the country and culture in which the hospital serves. The following is part of the Correspondent series, filed by Edwin Ongom, our national CUREkids Coordinator in Uganda.
The CUREkids in Uganda are a blessed group of children. They have been blessed with favor and an opportunity for total healing. The very presence of numerous world-class specialists in neurosurgery at CURE Uganda, especially those who specialize in treating hydrocephalus, is a testament to this fact. Some of the world’s best experts in neurosurgery have dedicated themselves to finding a lasting solution for treating and preventing hydrocephalus.
One such expert is Steven J. Schiff, MD, PhD, Director of the Penn State Center for Neural Engineering. The first time Professor Schiff came to CURE Uganda he met with Dr. Ben Warf, who pioneered the revolutionary ETV/CPC method of treating hydrocephalus. As the two spoke about the medical world and hydrocephalus, Dr. Warf lamented the condition of the children with hydrocephalus and hoped that one day a preventive measure would be found. This conversation inspired a long journey of research over the course of the past six years, according to Professor Schiff.
Our CUREkids Coordinators are CURE’s eyes and ears on the ground in our hospitals. They not only file photos and updates on each CUREkid but also act as Correspondents, giving us a glimpse of life at the CURE hospital and in the country and culture in which the hospital serves. The following, filed by Edwin Ongom, our national CUREkids Coordinator in Uganda, is part of our Correspondent series. These are his reflections from a special day of service and celebration for the CURE Uganda team.
Dr. Benjamin Warf, former Medical Director of CURE Uganda and current Director of the Neonatal and Congenial Anomaly Neurosurgery Program at Boston Children’s Hospital, recently came to visit with a team of surgeons from the United States. These surgeons came to CURE Uganda to learn new methods of treating hydrocephalus. Dr. Warf pioneered this new approach and the surgeons came to learn it with the intent of applying it back in the United States. They have performed multiple life-changing surgeries in the few days they have been here.
When our patients learned that the man who pioneered the ETV/CPC method was going to be at the hospital performing surgeries, emotions ran high. One mother who had brought her daughter told me that that her hope had been restored. When I told her that Dr. Warf is also a committed Christian she was even more excited.
This article was originally published in the Summer 2013 edition of Healing, CURE’s quarterly newsletter.
Joy is the feeling that swells your chest and brings the happiest of tears to your eyes – the exact feelings experienced by Zambian police officer T. Africa the moment he held his new daughter in his arms. Choosing a name was easy: Joy. At six months of age, though, happiness turned to worry and fear as Joy’s eyes began to sunset (roll down), her head began to enlarge, and her painful tears seemed to reject her very own name. Panicked and confused, T. Africa and his wife looked for help.
Like most members of their community, Joy’s parents went to a traditional healer, or “witch doctor.” He brought a flickering light to their darkening fears. He told them that some neighbor had poisoned their little girl out of jealousy for her beauty. He pulled out charms and poured potions over Joy’s tiny body. For the next year, he would continue to perform spells and pour potions, but to no avail. Then the healer said to bring in a white chicken.
While Joy was watching, he slaughtered the white chicken, taking its still-fresh blood and rubbing it all over her body. This traumatized Joy, and guilt began to rise in T. Africa. Any flicker of light he still had in the with doctor’s ability was quickly snuffed out as Joy’s conditions worsened. T. Africa knew he couldn’t put his daughter through any more “treatment” from the witch doctor. He had to look elsewhere.
Janet Kirkman, one of our valued volunteers, traveled to Uganda in the summer of 2013. Janet was a champion for our patients and their families during her time in Uganda. But Janet was already a champion in her own right, having raised a child with hydrocephalus. Many mothers whose children are affected by disabilities like hydrocephalous are abandoned by their community and considered cursed as a result of their child’s condition. For Janet, this trip was an opportunity to show love to many mothers who could share in her struggle.
We encourage our volunteers to take a skill with them to share with the mothers of our CUREkids - anything from soap-making to bead-crafting! An activity usually bridges cultural divides, crosses language barriers, and alleviates any social discomfort. Janet chose to take her nimble fingers to Uganda and share the gift of sewing.
Unfortunately, just a short time after she arrived, her supplies went missing! What would she do now? Her tool to reach the mothers had been stripped away.
Janet didn’t have many answers, but she did have faith. She trusted that she was called to serve these mothers and their children. And “sew” she did!
Sometimes the Lord measures out our lives and provides us with exactly what we need. Janet followed in her Father’s footsteps and measured out her resources. She rolled up her sleeves, went into town, and purchased more fabric, needles, buttons, and thread. Upon her return, she found she was filled with more fervor and dedication to these young women. Her resilience to love and serve the mothers quickly won them over and relationships blossomed over conversations and stitches.
Janet’s plan had to be refashioned by the Lord, but her finished product was more beautiful than she ever could have imagined. He measures out the exact amount of love and grace we need for each day, cuts it out, stitches it into our hearts, and steps back to smile. He alone knows the pattern of our lives.
We are so thankful for the service of all of our volunteers. Our hospitals are more vibrant and joy-filled as a result of their presence. Janet’s story is one of thousands from volunteers who have taken the time to “sew” love into the hearts and lives of our patients and their families.
Will you allow the Lord to pattern your life? A life filled with joyful service is at your fingertips. All you have to do is be willing to measure out your resources and use them faithfully.
LEMOYNE, PA — Michael May was fortunate enough to be born in the US, where care for his hydrocephalus condition was available. A surgery as an infant saved his life. Now, 20 years later, Michael is saving the lives of other children by raising funds to provide surgical care for children in the developing world through CURE International’s Champion program. A member of the inaugural Champion team, Michael, of Cynthiana, KY, was named the winner of the first Champion team today.
Depending on the severity of the condition and the response to treatment, the survivors of hydrocephalus can face severe limits in their development and abilities. Michael has defied that, leading an active life as a runner. When Michael learned about the CURE Champion program, he was thrilled. “I’m known for two things where I’m from, ” said Michael, “running and hydrocephalus. The CURE Champion program combined these two things in order to help kids.” Michael continued, “I’ve always dreamed of knowing somebody else with hydrocephalus, but to raise money for the surgeries? That’s something special.” Read the rest of this entry »
We were an interesting group. Eleven people from seven countries on three continents, born into seven ethno/linguistic groups, coming together in a country none of us was from for a single purpose: To learn about and share in the ministry to families of children with hydrocephalus in our respective countries.
We met for the first time in Kampala as we waited for the last member of our cohort to arrive. It was Sunday morning and various degrees of jet lag and travel weariness were put aside as we gathered together for a short time of prayer and sharing. Just beginning to learn one another’s names but united in focus, we packed our luggage into the bus and began the five-hour drive to the CURE Hospital in Mbale. Only three of our troop had been to Mbale before, so the sights and sounds were fresh and different. Read the rest of this entry »