Miguel is a happy and vivacious three year old. He loves to sing and play like any boy his age and always has a mile-wide smile on his face. But Miguel is not like all the other children his age. You see – Miguel was born with a rare congenital disorder named artrogriposis. This disease causes multiple joint contractures and is characterized by muscle weakness and fibrosis. The name is derived from the Greek and literally means curved or hooked joints.
At birth neither Miguel’s arms nor legs would stay in a normal posture. His mother Carmen began the grueling schedule of daily two hour round trip bus rides to San Cristobal for physical therapy. That is until she was diagnosed with cancer. Then her eighteen year old sister in law Josmay stepped in to take over while Carmen recovered from surgery and radiation therapy.
Today Miguel has use of his arms due to therapy. He must see the doctors in Caracas every twenty days for evaluation and adjustment for his therapy. The twelve hour overnight bus ride is intolerable for him so he and his mom fly to Caracas. So far they have made sixty four such trips. Expensive surgery on his pelvis, knees and ankles is in his future but there is hope that he may someday walk.
Their tiny home is set up to accommodate Miguel. Furniture is sparse and nothing is kept on the floor so he can crawl and scoot about as he pleases. Josmay continues to live in the home and Miguel calls both women mama.
His father, Miguel also, has made him a board for scooting about the floor and a bicycle which he can propel by hand. He works as a school teacher making minimum wage and all income goes towards food and Miguel’s medical expenses.
Due to the families financial circumstance and Miguel’s need to be in a loving and accepting environment Andean Aid has enrolled him in our school Colégio Privado Juan Christiansen tuition free. I had the opportunity to witness Miguel giving a presentation at school. He was determined to stand for this and fell four times until he could brace himself against the wall standing. With a huge smile on his face. We are pleased to serve this incredible little boy and this inspiring family.
Mariana is an adorable five year old. She is friendly, outgoing and trusting. Great traits – except when you are roaming the streets of the city. Then such traits can prove disastrous.
Her mom is a single working mother with two older children. Children with problems that consume her time, energy and money. She works as a hairdresser and having no place to leave Mariana would bring her along to work. Invariably Mariana would get bored at the salon and wander into the streets to play.
Concerned citizens contacted the administrator of our school Colégio Privado Juan Christiansen to see if there was anything we could do. Evaluating the situation we decided to bring Mariana into our school tuition free. This frees her mom to earn an income stress free and gives her time to address the other family concerns. Mariana loves her school and is flourishing there.
Though Colégio Privado Juan Christiansen is a private school we are reaching into the community, and the community is reaching out to us, to serve those with special needs.
