In Haiti, being born with a disability does not only limit you physical capabilities, but can also determine your fate.
Life is Haiti is motivated by one purpose, survival. Being born with the disadvantage of having a disability lowers your risk of survival and is therefore the cause for much neglect, abuse and abandonment. When a “kokobe”, the Haitian Creole term for a person living with a disability, is born, their family views them as an extreme burden. If they cannot properly care for themselves, or contribute to the household needs, which are how their value is calculated, they are worth hardly anything to the very people who gave them life.
Haitian Vodou is the ruling religion throughout Haiti. Haitian people are typically, extremely superstitious. These fundamental, cultural beliefs are the root behind the persuasions that someone living with disabilities is cursed or worse yet, the parents carry guilt from believing they were the cause of determining their child’s misfortune.
Many Haitian children born with disabilities are abused, neglected or abandoned by their family members, due to reasons mentioned above. Left to die, like a dog in the street. This could have very easily become a little baby named Carla’s story, but by the grace of God and some incredible people, her story is one of victory and triumph, rather than pain and defeat.
Baby Carla was born in May of 2013 in Port-au-Prince, Haiti, with a severe case of “Arthrogryposis Multiplex Congenita” or “AMC”. AMC is a condition described as a group of non-progressive conditions that cause multiple joint contractures (stiff joints) and abnormal muscle development.
Carla’s father passed away before she was even born, leaving her mother Adeline alone to raise a brand new baby girl. When Adeline realized how severe Carla’s condition was, she became ignited with desperation and a passion to find help for her baby. She knocked on door after door in Port-au-Prince looking for anyone who could offer aid to her sweet baby, but to no avail. Every door was closed in her face and she was encouraged to literally throw her baby away like garbage.
But Adeline would not give up hope. She knew there was significance to Carla's life and She was determined to find a way to help her daughter, even if it meant traveling 8 hours north to a small village known as Ouanaminthe.
Adeline had no friends or family living in Ouanaminthe, but she heard of an orphanage and clinic that would possibly be able to offer Carla care for her extreme condition. It was her last chance of finding hope and an opportunity to provide proper care for her daughter.
When Adeline arrived in July of 2013, exhausted, drained and nearly at the end of her rope. She had no money and had been sleeping in the street. She was sitting in the lobby of a small hotel near the orphanage of Danita's Children, on not a chair, but bags of rice, when one of the older boys, Robenson found her. He immediately took in the severity of Carla's condition, and knew the exact person who could help. He ran to get Missionary Sarah Conque to meet Adeline and Baby Carla. Upon approaching her, she could see the amount of pain and anguish evident in Adeline’s eyes.
Sarah fell in love with Carla the minute she laid eyes on her, and made a pledge in her heart to be this little baby’s advocate. She has a masters’ degree in recreational therapy, meaning she is licensed to provide care for children with disabilities, and had been providing therapy programs to the children of Danita’s Children for several months.
She knew it was not a coincidence that the Lord had led Adeline to Ouanaminthe and more specifically into her life. The journey to providing long-term solutions to Carla’s condition would not be easy or quick, but Sarah was willing to fight on her behalf and do whatever it took to connect her with the best possible medical care.
It has now been nearly ten months since Adeline and Carla first arrived in Ouanaminthe. What was once a dim and hopeless situation has turned into an incredible story of the power of the love of God and the tenacity of a mother.
Several months ago, Adeline made the decision to dedicate Carla to the Lord in front of the entire congregation of Temple de Espoir pou Haiti. In Haitian culture, to make a public declaration of your love, acceptance and ownership or a child with a disability, is astonishing and unheard of. Adeline's step to commit to raise Carla as a woman of God is not only remarkable and inspiring, but a true manifestation of the verse found in 2 Corinthians 4:7 (NLT) - "We now have this light shining in our hearts, but we ourselves are like fragile jars of clay containing this great treasure. This makes is clear that our great power is from God, not from ourselves."
Carla has been connected with renowned physicians from the United States who have made a commitment to oversee the surgeries she requires in order to improve her quality of life. Her surgery in Port-au-Prince is well in the works and she has been receiving castings in preparation of that surgery for the past month.
Continue to believe with us as we lift up baby Carla and her mother Adeline in prayer and rejoice with our Father for the victory and triumph of His unfailing love and mercy in each of their lives.
1. National Center for Translational Sciences, Diseases, Athrogryposis Multiplex Congenita. http://rarediseases.info.nih.gov/gard/777/arthrogryposis-multiplex-congenita/resources/1 (December, 2012)