It’s Sunday morning and I’m doing a couple of outreach visits on my drive back to Maseru from Leribe. I am with a co-worker from Leribe, Mme Koloi, and we stop at small hut close by the road. There are six children living in the two tiny rooms with their granny. Their mum has run away, and Granny is a tour de force, caring deeply and joyfully for her grandchildren. She works hard every day to provide for them with food, shelter, and comfort without a trace of resentment about the situation she finds herself in.
The children are aged between 3 to 15, the youngest has hydrocephalus and is struggling to sit up and control the heavy weight of her large head. We have given her one of our APT cardboard chairs to support her and use the table to improve her hand skills by playing and eating. Granny clears away the mattress on the floor they sleep on and brings out the APT chair and table for the little girl.
I’ve brought her a couple of books and some crayons, but she is far more interested in the bag of Simbas, (crisps) her older sister has brought her. The siblings gather around and try to encourage her to use the crayons, but clearly Simbas top crayons every time. Her older sisters are very kind and gentle with her, carefully positioning her head and making sure she doesn’t choke on her snacks. Granny roars with laughter and you would never know this is a destitute family living in dire circumstances. They seem richer and happier than most families I know who have material wealth and comfort beyond their dreams.
We leave after a photo shoot which includes barefoot granny’s toes nails which she has proudly painted bright red. More laughter erupts as granny strongly advises me to do the same. We jump in the car and head off to the next visit. Before we get very far Mme Koloi suddenly asks me “Where do you go to church Mme?” As it’s Sunday morning and a large proportion of Basotho will normally be at church, I guess she wonders what I do. Without hesitation I say “Here!” She looks puzzled and I elaborate. “Here!” I repeat “When I’m out on visits. With people like that granny” I point back down the road.
She laughs a little and I’m not sure she quite understands me, but I am clear in my own mind that I am more likely to get closer to God in the household we have just visited than in a church. Mme Koloi guides me to the next home visit. She has sent me a video of the boy a few days ago and I fear what I will find. The boy is sitting on the ground propped up against the wall when we arrive. Dad greets us with a smile of relief, but I can already tell it is unlikely I have any good news for him. The boy is unable to stand and follows us in, waddling crouched down on his haunches. He’s 17 and hasn’t been able to walk for the last three years and still doesn’t have a diagnosis. The dad says his younger brother is now starting to develop the same symptoms, stumbling, and struggling to walk. My heart sinks further and I ask to see the brother as well.
I assess the younger brother getting up and down from the floor. He has Gowers sign and can’t get up the single step without using his hand to press down on his leg and straighten it. The older brother can’t actively extend his legs at all, but he still has some power in his upper limbs and could self-propel a wheelchair if he had one. Mme Koloi translates for me, and I explain that my impression is that both boys have muscular dystrophy, probably the most common type, Duchenne’s, DMD, and that it’s a genetic progressive muscle wasting disease. I’m not sure how much dad is taking in and write my diagnosis in their Bukana’s (small medical book). I tell the younger brother to take care walking, because he is falling a lot and to try not to get too tired or upset if he can’t keep up with his friends. I tell the older brother I will get him a wheelchair as soon as I can.
Dad is overcome with gratitude, that finally after three years his son will get a wheelchair and a bit of improvement in his life. He excitedly asks the younger brother to fetch something, and the boy reappears moments later clutching two carboard top hats and a book with beautiful detailed pencilled drawings in it belonging to the older brother. The boy has become shy and withdrawn as his disability has progressed taking away his independence and dignity. He hasn’t been able to go to school for years and dad has had to make him a special small toilet as he can no longer pull himself up onto the family long drop. Yet, despite everything, he has been using what ability he does have with his hands to draw detailed pictures and make carboard top hats. I smile at his inventiveness and tell him to carry on with his brilliant work and I will get him a wheelchair with a desk to help him.
We leave and Mme jumps in a taxi to go back to Hlotse while I carry on to Maseru. The second visit has confirmed the thoughts I had earlier, that this is where I go to church. Here amongst the poverty and adversity you can find true kindness and courage and all that is good in humanity. The car radio is on, and the world service relays the latest horrors in the Middle East. I turn it off and gratefully reflect on this morning’s visits.
