The following story
about Gabriel is the first in a series of three “Perfectly Human” posts that
will highlight the work of the Special Hope Network, an organization devoted to
serving the needs of children with intellectual disabilities in Zambia. In this
season of giving, as I mentioned in my post this morning, I urge readers to
consider a small gift to support SHN.

In our time in Zambia, we have been trying to count the
households with a child with an intellectual disability. The World Health
Organization states that in developing countries, two out of every ten
households has a child or adult with an intellectual disability. Our unofficial
team-based interviews through the compound (kind of like a neighborhood in the
U.S.) called N’gombe found one in three households had a child with an
intellectual disability. One in three, not one in five.

On one of the days when we were walking through the compound
and counting, we met a family with a baby who is blind, has no muscle tone, no
language, and what appears to be a significant intellectual disability. His
name is Gabriel. He is now one year and five months old. 

Since we’ve met him, we have taken Gabriel to a developmental pediatrician for a full evaluation, CT scan, and ultrasound of the eyes. We found through blood tests and careful observation that he has Lowe’s syndrome. Boys with Lowe’s Syndrome are born with cataracts in both eyes, which are usually removed at a few months of age. Most boys are fitted with glasses, contacts, or a combination of the two. Glaucoma is present in about 50% of the boys with Lowe’s syndrome, though usually not at birth. Prescription eye drop and/or surgery is required to maintain appropriate eye pressure in these cases.

Many boys with Lowe’s Syndrome develop kidney problems at approximately one year of age. This is characterized by the abnormal loss of certain substances into the urine. We have now begun giving Gabriel sodium bicarbonate, which should help some of the physical effects.  We have also taken him for eye examinations, resulting in surgery in one eye, and the potential for eye surgery in the second eye in early January.  During the surgery, the doctor reduced his eye pressure (glaucoma), and removed a cataract that had been there since birth.  He is now healing well, and has started living at a new home from Monday through Friday of every week. He was last in line for food in his previous home of twelve people, since he would not be a contributing member of his family. Presumably, he was tiny due to the fact that he wasn’t eating very much. When I visited their home, his mom unwrapped a piece of an orange for him from a little piece of fabric. It was ONE segment of an orange, and he made it last for almost twenty minutes.

Our friends at Kasisi Orphanage, who love children in a way that seems to honor God very much, offered to care for him, so that he could eat all he wants to each day.  As soon as our classroom is set up there, Gabriel will become a student. He will have the therapy and educational stimulus he needs to grow. We are paying for his Mom to go visit him as much as she wants, as well as for her to drop him off and pick him up. She chose this change for her son because she knew she could not provide what he needs for life. She is the wife of the matriarch’s younger brother, and so she works–cooking and cleaning for all, with no money to use for herself or her son.  I can’t fathom having as little say in my life as she has. I want to scoop her up and out of her home. I can’t. But she released Gabriel so he could live and learn. 

By the end of January, we hope that all the medical care Gabriel hadn’t received up to this point in his life will have been provided, and we can start teaching him.  Hopefully the weeks at Kasisi will strengthen his body as well. I look at his little frame (only in the 3^rd percentile for height and weight), and think that if we had stayed in the U.S., where life was easier for us, he might not live past his second birthday, as his brothers didn’t. Praise God with us that He caused us to move and to begin Special Hope Network, and that He went before us to prepare the way so that we could meet and care for little fellows like Gabriel.