Carlito’s birth mother was twenty-four when he was born. She already had three kids. Her first was born when she was fourteen and this pregnancy was the result of an extramarital affair. She was frightened of her husband and her father thus a distant relative living in Antigua agreed to house her for the balance of her pregnancy. She could tell everyone that she was away working. Her relative, Juan Carlos, is a lovely man who always wanted to have children but never found the right partner. A deal was struck and Juan Carlos agreed to adopt the newborn and the mother was to stick around for a couple of months and breastfeed the infant. However, the newborn Carlitos apparently wanted nothing to do with the mother who was going to abandon him. He refused to nurse so was given a bottle and mama returned to her rural community several hours drive from Antigua.
Carlitos is adored by his adoptive family, his father, grandparents, aunts, uncles and cousins. He is very personable, self-assured and obviously highly intelligent. He introduces himself to everyone and seems to remember every word he hears in both Spanish and English.
The first indication that all was not right came before Carlitos was a year old. His eyes seemed not to focus. Off they went to a pediatric opthamologist who determined that his vision was very poor, his optic nerves way too thin and that his development was delayed. The assumption then was that the developmental delay was caused by the poor vision. Once he was outfitted with prescription lenses the difference was quite remarkable. For the first time he seemed to focus. Perhaps for the first time he could actually see.
But then his upper front teeth never came in and his walking was delayed and required physical therapy. Eventually, Papa received the devastating diagnosis of Duchenne Muscular Dystrophy which means that Carlitos’s muscles, including his heart and the muscles surrounding his lungs, are going to deteriorate for the lack of dystrophin, a protein that is essential for muscle development. Carlitos has a genetic mutation that prevents his body from making usable dystrophin.
While six months ago Carlitos was still able to walk today he is dependent on a wheelchair and family members who can still lift him and move him around. He likes his wheelchair as it gives him more independence.
What Guatemala lacks in resources for children like Carlitos it makes up with human kindness. A non-profit orgranization, Transiciones builds and repairs wheelchairs and walkers. They took Carlitos under their wing providing a walker which he can no longer use and his current, child-sized wheelchair along with therapy sessions to teach him how to use both. Most of the employees at Transiciones, including the director, are all wheelchair bound for one reason or another. Carlitos was thrilled to find out that there were others who got along with wheelchairs.
Carlitos has been an enthusiastic swimmer from an early age. He attends pre-school in the mornings and several times a week swims with an American physical therapist who donates her time and enthusiasm to Carlitos. Swimming allows him to be free of his wheelchair and briefly experience some independence and just have some fun.
And then there is the pediatrician at a local clinic who understands that Carlito’s father is supporting his whole family on somewhat less than $1,000 a month and she stockpiles free samples of the cortisone based medicine that might delay the progression of Carlito’s disease. Without those samples the medication which is very expensive might not be available for Carlitos.
His life will be short but charmed in so many ways as his situation has brought out the best in so many people around him. My hope is that this little angel passes peacefully before he loses his innocence and starts to understand his situation and ask “why?” Only God knows how his devoted papa will cope with the loss.