2.1.13
Daniel has diabetes. A generous foundation in Australianow provides Daniel and other children at JDJ Hospital with all the insulin and testing strips they will need. But recently, we discovered that Daniel was starving to death. His disease makes it impossible for his body to consistently use simple sugars well to nourish it and grow, yet it is only simple sugars that Daniel eats: rice, corn, bread, juice. Why? Put simply, Daniel is poor. His grandparents daily forage for food at the market leaving Daniel at eight years of age home alone to prepare meals for himself. Daniel needs a regular supply of protein from meat, fish, leafy vegetables and beans. This will cost about one dollar and fifty cents a day, so the price of Daniels life for three months we put at $135. Daniel is an awesome kid who is quiet, polite but teaming with emotion just waiting to erupt. Help Daniel get consistently nutritious meals and follow Daniel's progress through this site.
12.22.13
Daniel was discharged from JDJ today. This is the third time he's been admitted to the hospital with DKA this year-- life-threatening high blood sugar and acidosis due to inadequate endogenous insulin. We know Daniel has enough exogenous insulin because he comes to Diabetes Clinic every other week for his supply and the other patients are doing well. My theory is that Daniel is still competing with his ten brothers and sisters for food. Since food is inconsistent, he knows if he gives himself his full dose of insulin he will feel bad (and it may kill him) so he reduces the dose or dispenses with it all together. Then all of the sudden there is food and Daniel binges. His sugar sky-rockets and so begins the steady spiral. A truly vicious cycle. Augustine and I have not given up. We are going toteach Daniel how to dose his insulin according to the carbohydrates he actually eats. But he has to get his three meals. Daniel is as skinny as a stick. I think the meals are going to have to come in school.
3.15.15
Daniel whispers to me that he cannot wait to go back to school. We talk about how the President is rumored to be on the verge of declaring Liberia Ebola free and thus education back open for business. It's about time. Is having an entire nation of children at home for ten months safer? It's not like the children stay at home.
Daniel is okay. I finally have a diagnosis for his distended abdomen and swollen facies. It's called Mauriac syndrome and it's a sign of uncontrolled diabetes in adolescents. All these physical manifestations can be reversed with proper sugar control. That's the good news. The bad news is that unless we are able to buy enough food for the other eight children in his family, Daniel will always be food insecure and his sugar difficult to control. Luckily, the consequences of blindness, compromise to peripheral circulation and heart disease do not seem to occur until after adolescence. Daniel is 14. In three years, technology will have to catch up in this country-- insulin pumps, beta-islet cell transplants, cultural specific calorie counting. There is no other way.
1.10.16
I thought about Daniel the other day when a mother in a California hospital where I was working showed me an insulin pump attached to her abdomen and a glucose reader attached to her arm. Using today's technology, she doesn't have to dose her insulin at all. The glucometer signals in real time her glucose level to the pump, which in turn infuses the correct volume of insulin. No more pricks! No more dosing errors! No more short and intermediate acting insulin mixture!
I rarely believe in technological fixes to anything of substance, but alas, in the case of Daniel's diabetes, this is what Daniel needs. He has for years lost the fight for food in his family. He therefore cannot dose his insulin based on his metabolic needs-- the whole point of insulin therapy. Consequently, his sugars are all over the place and Daniel can and has become quickly and deathly ill. Daniel remains humble. In the five years I have known Daniel, he has never admitted to being hungry when I know he is often starving.
"You already eat?" I ask.
"Yep," he always says.
Then we go to eat.
9.11.16
The details are murky but dear Daniel passed away today. This language makes it sound like Daniel's death was peaceful but it likely wasn't. For one, he was admitted to the hospital for severe malaria which is a paradoxically painful and exhausting disease. Second, he was cared for by medical personnel who didn't understand he had insulin dependent diabetes, which was the more important disease to treat.
Daniel's death is all at once sad, overwhelming and expected in the day and life of a boy in Monrovia, Liberia. There is life everywhere there but tragedy abounds too. We tried very hard to protect Daniel over these years, but in the end we failed. He was a kind gentle boy and in a way was really just waiting to begin.
Daniel leaves behind his grandmother, grandfather and eight brothers and sisters. Rest in peace, dear Daniel.
