Alves to India
Late in the day at a makeshift ‘medical mission’ clinic in the Bahamas as the doors were closing for the day, a family hesitantly knocked on the door. Judging by the looks on their faces, the volunteer nurses knew they were desperate for help. Avles, an adorable seven year old boy stood before them – they could smell him before they met him. Alves’ father, Lucner, out of desperation and faith asked if they would see his child, not really expecting they could do anything.
But the story of Alves Anofils begins long before his birth in 2012
In 1997 Alves’ parents, Lucner and Carole Anofils were married in Haiti and started to build their life and family. Lucner was struggling to find work and had no means to support his growing family. In 2000 he left his family behind and travelled illegally for three days in a crowded boat with no food or clothes to the Bahamas to try and make a better life for his family. He survived on the kindness of strangers who helped set him up with a work permit. He finally saved enough money to bring his wife to the Bahamas in 2005. Their two oldest children remained in Haiti with family, and the couple had three more children while together in the Bahamas, including Alves who was born on July 5, 2012. It would be years before the family had enough money to be together again.
A Difficult Beginning for Alves
Carole was told by local doctors during her pregnancy with Alves that he would have a medical abnormality, but they didn’t know it would be a complex and rare condition – bladder exstrophy. At just four days old Alves had his first surgery, and spent his first three months of life in the hospital. The family learned Alves was going to need additional surgeries, but for now they were allowed to take their infant home and care for him as best they could. Unfortunately Carole was caught by immigration officers and was deported back to Haiti, along with her children.
Alves was now living in Haiti and the family continued to try to find him care. As with many developing countries, Alves bladder surgery failed. There were no doctors in Haiti with the expertise to help him. His bladder again protruded through his abdomen and continuously leaked urine.
In 2017 the family received permits to go back to the Bahamas and Carole immediately began trying to find help for their son who now desperately needed surgery. The local hospital was both unwilling and unable to help. They told the family they could facilitate the surgery with another hospital, but it would cost thousands of dollars that the family did not have.
A Father’s Last Hope
Remaining strong in their faith, Alves’ father shared just how dire their situation has become. “I couldn’t help my son because we didn’t have the money that was required. Still, we didn’t give up and continued to search for help. Alves realized very young that he would always be different from any other little boy. He would sit alone and cry. He prayed saying ‘Lord please help me.’ As he got older, it started to affect him more. Alves was not allowed to go to school because he couldn’t control his bladder. When he needed to use the bathroom he would pee on himself and other kids would bully him. Alves felt so different and alone.”
When it seemed like things couldn’t get any worse, in 2019 Hurricane Dorian hit Abaco and the family lost everything. They had nowhere to live and up to this day are still living in a tent that is part of the shelter clusters. But time is running out and the family has been asked to move out of the shelters soon. Alves’ father is learning how to do construction and the family is urgently searching for permanent housing. As always, Lucner continues to search for someone who can help give Alves the surgery he so desperately needs. “This would really be life changing for my son and also my family.”
From Hope to Help
Cathy Edson, a nurse with the Bahamas medical mission, was exhausted after a long day of treating families for minor problems and ailments. Alves and his family were the last patients of the day. Cathy remembers a happy, sweet little boy who smiled despite his pain and suffering. Not sure what was wrong with him, they cleaned the infected fistula on his abdomen and sent him home with antibiotics. But Cathy couldn’t get this little boy out of her mind, so she decided to do a home visit on the way to the airport. This is when she discovered that he had been born with bladder exstrophy (BE). “I had never dealt with a BE case and it looked as if the team of surgeons in the Bahamas hadn’t either,” Cathy acknowledged, “They basically stuffed his bladder back into his abdomen and made a hole to drain urine. This poor boy was in pain and reeked of urine.”
Grassroots Efforts Lead to Global Help
Upon returning to the US, Cathy couldn’t stop thinking about Alves and for two years she advocated for him. She contacted every US based pediatric surgeon qualified in bladder exstrophy care. But hospital regulations make it almost impossible to treat international patients who aren’t able to pay the approximately $600,000 fee.
After sharing Alves’ story with anyone who would listen, Cathy received a call from Dr. Aseem Shukla of Children’s Hospital of Philadelphia. He offered to do Alves’ surgery as part of an annual consortium of international pediatric surgeons who are experts in the rare condition. Dr. Shukla contacted A-BE-C’s Executive Director, Pamela Artigas, who has built a global support network that is a lifeline to families and children around the world with bladder exstrophy. A-BE-C raises money to transport children around the world to India for treatment under the mentorship of a team of bladder exstrophy experts. In addition, Artigas has partnered with Muljibhai Patel Urological Hospital (MPUH) which has generously welcomed children from India, Uganda, Ghana, and Iran for surgery and treatment at no cost to the patients.
How You Can Help
Alves’ family and the international bladder exstrophy consortium are busy preparing for his surgery which is scheduled for January 24, 2022. The surgeons are donating their time and services to perform Alves’ surgery. The hospital is donating the long hospital stay while Alves recovers.
But the trip from the Bahamas to India is costly. There are upfront travel costs for him and his parents, as well as the daily living expenses while Alves and his parents focus on his two month recovery in India. This family has endured so much, and they have very little. So many miracles had to take place in perfect timing for this one surgery that will truly change a little boy’s life.
No donation is too small! $25 will help provide daily food for the family while Alves recovers from surgery. And if you aren’t in a position to make a financial contribution, please help us share his story.
“Our God cares so much about this little one who lives “in the mud”. And A-BE-C truly cares about each and every individual with exstrophy. I am so grateful to be part of this amazing story. On behalf of the Anofils family, thank you for your generosity. We hope we can count on your support this Giving Tuesday.” – Cathy Edson, Alves’ nurse and advocate