Sandley is 20 months old. Yep, that is not a typo – he will be two years old in September of 2012. I didn’t ask how much he weighed, but from the times I held him I would guess less than 15 lbs – smaller than an average 3 month old.
Sandley appears (to me – not a medical professional) as mentally alert and responsive as any average infant in the U.S. He is most likely to smile when making eye contact, and he discerns the voices of his “special” people that he is close to – particularly his blan papa, an NWHCM missionary named Justin. His eyes are huge and wise, his face is expressive. He knows when he is being held by someone who loves him.
The tiny muscles in his arms, shoulders, and back are so well developed that many of my Marine gym-rat friends would be envious. He holds his muscles under tension at all times, even when sleeping. It seems a little like living inside a perpetual charley-horse.
When Sandley has one of his many seizures, he cannot even cry. His body curls up even further – sometimes his feet almost touch the back of his head, and his head turns to look over his left shoulder. In the strongest of his seizures, his arms and hands tremble as yours or mine would if we clenched them too tightly. As he begins to relax, he is able to cry.
Sandley’s malnutrition is advanced – he has symptoms of kwashiorkor, a protein deficiency that causes his hair to grow in thin, fine, and red instead of black. He is fed a very mild formula, dripped into his mouth through a syringe, but his stomach is so sensitive that even this causes diarrhea and he does not absorb much nutrition as the formula passes through him. The co-directors of the Miriam Center, the OT, and the doctor are discussing options for helping his little body take in nutrients more efficiently – it may be possible to place him on a continuous-drip feeding tube for a time until he gains a little weight and his organs function a little more efficiently. He needs to be just a few pounds heavier before he has a chance of being able to tolerate the anti-seizure medications that could begin to ease his pain.
The Miriam Center is one of the very, very few places in Haiti that is equipped to take care of special needs children. They operate on a shoestring budget, but the 47 young people that they care for are loved, cared for, educated, and have treatment plans developed by a special-needs experienced OT. There is a chronic shortage of diapers, food, and medical equipment – there is no shortage of love. To learn how you can help, visit http://www.kimmyshouse.com/ .