Alexandra

Alexandra is a typical little girl – she loves playing with her dolls and fighting with her older brothers. She likes to play “make believe,” too, imagining she’s a doctor and her dolls and stuffed animals are her patients – she checks their sugar and gives them injections and makes sure they stay healthy. You see, Alexandra has type 1 diabetes, which she was diagnosed with in June of 2008 when she was 7 years old. She knows a lot about doctors and hospitals and what children with diabetes have to go through, because she’s living it. Her little fingers get pricked at least 8 times a day, and she’s injected with two different types of insulin a minimum of 5 times a day. That’s a lot of pain for a parent to have to inflict on their child.

But it’s what we – her parents – have to do to keep Alexandra alive.

Alexandra is amazingly strong and brave, and we’re very proud of her. Having to live with a chronic disease is a huge responsibility, but Alex handles it with aplomb. With rare exception, she doesn’t complain or whine about the injustice of it all. No “woe is me” type of attitude. She deals with it and moves on.

We live in a developing country, and there are certainly more challenges here than in the United States, where Alexandra was born. While we have no access to an insulin pump or CGM – that technology is just not available here in Ghana – we manage to cope quite capably using multiple daily injections. We’re very lucky, because we have the means to keep Alexandra healthy through MDI – those 8 sugar checks and 5 injections of insulin per day are very expensive, and most families here simply cannot afford that level of care.

Local Ghanaian children with diabetes are forced to rely on relatively antiquated diabetes treatment – using insulin pre-mixes, which combine both long and short acting insulins. These are not ideal, and often result in the child going low for lack of carbohydrates. Exacerbating the problem here is the cost of blood glucose monitoring – a glucometer can cost as much as $100 and strips $35 for a vial of 25 strips. Most families of children with diabetes can’t afford the strips, much less the meter. So they don’t regularly check. They just do the best they can by injecting insulin blindly, in the hope that it’s just enough. If it isn’t they’ll find out soon enough, one way or another; either their child will go low or get incredibly sick and be admitted to the hospital with ketoacidosis.

It’s documented that most children diagnosed with type 1 diabetes living in Sub-Saharan African die within a year of diagnosis.

We are truly blessed that we can give Alexandra the care that she needs. Our fervent prayer is for a cure. No child living in Ghana, or anywhere else in the world, should die for the lack of money for good treatment. Or for lack of a cure.

Barbara & Sylvester

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