Understanding Privilege: D-Dad Volunteers for Life for a Child

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Life for a Child - Deam Trust - India

After my two-year old son Sacha was diagnosed with type 1 diabetes in early 2009, months passed before  the fog of fear and uncertainty began  to lift. By fall 2009, however, I was able to think outside of my own family and our struggle, and I  wondered: what did pediatric diabetes management look like in the developing world? My wife and I had worked for years in international human rights and development, and had often traveled to countries where the medical system struggled. It was hard for me to even begin to think about what type 1 diabetes management might look like in resource-poor countries.

The night  Sacha had a severe hypoglycemic episode, we used our glucometer, test strips, glucagon injection and cellphone to diagnose, treat and call for help. Paramedics swarmed the house, and our endocrinologist’s soothing voice talked us down. I went back to sleep that night feeling relieved and grateful for the tools and care we had. But, how, I wondered, did parents deal with similar incidents in poor countries? Were insulin, needles, test strips and glucagon readily available? What about middle-of-the night expert advice?

I called our local JDRF and Canadian Diabetes Association, confident they would have some kind of project we could help support.

To my surprise, however, neither organization had any idea. “We don’t do that kind of thing,” they said, and from their tone, I suspected I was one of the first in recent memory to have asked  

Confused, I called the American Diabetes Association and U.S.-based JDRF; surely, I thought, someone in the U.S. diabetes community would have some kind of program. Again, I drew a blank.

After a few hours on the web, however, I discovered a handful of groups devoted to type 1 diabetes  in the developing world. I found aparticularly impressive website run by the Australia-based Life for a Child (LFAC), an affiliate of the Brussels-based International Diabetes Federation.

Acting on impulse, I sent its director, Dr. Graham Ogle, a spontaneous, nighttime email, one I thought I might  regret. “I’d like to donate money,” I wrote, “but would also like to help out in other ways. What can I do?”

The ever-courteous Dr. Ogle wrote back a few days later; ever since, my life has changed for the better.

Dr. Ogle initially wanted to work with my wife, who then worked as a senior development officer at a Canadian donor agency. As an academic, however, I had a more flexible schedule, so he suggested that I visit a few LFAC supported clinics. The group sends donations of insulin, supplies and money worldwide, but Dr. Ogle and his small staff can’t visit all of their partners as frequently as they might like.

My first LFAC volunteer trip was in 2010 to Nagpur, located in the exact center of India. I traveled with two endocrinologists from Sacha’s clinic at the Children’s Hospital of Eastern Ontario, Drs. Alexandra Ahmet and Caroline Zuijdwijk.

 

We met dozens of children cared for by Dr. Sharad Pendsey, a private doctor who created the Dream Trust, an Indian medical charity, over fifteen years ago. He has tended to their diabetes as well as he can, handing out free insulin and syringes to some 500 kids and youth every three months.

Electricity and refrigerators are in short supply, so patients use small clay pots for insulin storage.   To keep them cool, families bury the pots in the ground, or cover them in water. India’s summertime heat is searing, but somehow, the clay pots seem to work.

Dr. Pendsey and his staff track the patients as best they can, and offer a bit of money to help the poorest kids attend school. There are no funds for blood glucose meters or strips, however, so Pendsey guesstimates insulin doses by age and weight. Preliminary results from a baseline study led by Drs. Zuijdwijk, Ahmet and Pendsey suggest suggests that average A1Cs are very high.

LFAC supports about 100 of the Dream Trust’s patients, and is always trying to do more. Recently, the Australian charity negotiated a deal with Nipro Diagnostics for cheap strips; with a bit of luck, Pendsey’s patients will soon get a meter and two test strips per day.

There is no money for lancets, however, and it’s not clear that Pendsey or anyone else can make accurate insulin adjustments on such a low number of tests. In any case, most patients can’t call the clinic, and only make it in to Pendsey’s office once every three months. Under these conditions, it’s unclear how much their A1Cs can be improved.

My colleagues and I hope to soon begin evaluating the Nipro gifts’ impact. I desperately hope that A1Cs improve; otherwise, many of Dr. Pendsey’s patients will soon begin experiencing complications. There is no question that Dr. Pendsey saved the lives of these 500 kids and youth. Will they grow up and lead healthy lives, however, or will they soon start suffering from a whole host of diabetes-related diseases?

LFAC is now supporting over 10,000 kids with type 1 diabetes worldwide, and its resources are stretched paper-thin. Dr. Pendsey and other LFAC partners do the best they can, leveraging other donations and using their own money. 

When I  returned to Canada, my friends and I began raising money for Dr. Pendsey’s patients. In central India, 350 dollars pays for a year’s worth of insulin and syringes, and our small group of type 1 diabetes parents, doctors and hospital staff have managed to send about $5,000 each year to Dr. Pendsey’s Trust.

Since  I first connected with Dr. Ogle , I’ve volunteered for Life for a Child elsewhere in India, Mexico, and Morocco. Each visit has made me love the organization and its work even more. In early 2011, I returned to the northern Indian city of Haridwar, and in 2011-12, worked with a group of devoted Mexican diabetes associations to build a new, LFAC supported network throughout the country. In a few weeks, I’ll be meeting another LFAC partner in Rabat, Morocco.

Working with LFAC has made a world of difference to me. When my son was diagnosed I was depressed and scared. I realized that our lives had changed irrevocably; no matter what happened I would always be deeply anxious about Sacha’s health, every waking hour, for the rest of my life.

James and Sacha

James and Sacha

Today, however, I realize just how fortunate we really are. My five year old has unlimited access to insulin, needles, test strips, pumps, and continuous glucose monitors. Yes, we test his blood 13 times each day – including two or more per night – but after working for Life for a Child, I realize this is a privilege, not a burden.

You can listen to a radio documentary about the Dream Trust, prepared by Lucy Laycock, a British radio journalist.

 

James Ron is an American, Israeli, and Canadian academic, whose son, Sacha, was diagnosed with type 1 diabetes in 2009 at the age of two. Until then, James had never heard of the disease. Today, James is a member of the scientific and advisory group of Life for a Child, an Australia-based charity that supplies insulin and other diabetes supplies to children and youth in the developing world. James teaches international affairs and human rights at the University of Minnesota, and lives in Minneapolis with his wife, Emma, and their two children, Tessa and Sacha. For more information, please visit www.jamesron.com. 

Comments (1)

  1. Steve at

    I loved this story. It touches me in places out of reach of fatherhood, or of a caretaker of child with diabetes. 

    I don’t know why exactly, perhaps it is the fog and fear that James mentions above, but my wife, Franca, and I have been slow to respond to our shared interest in addressing the diabetic needs of developing countries. There was the period of adjustment for certain. Even three years later, we still feel overwhelmed at times, teary and sad at others, frustrated quite often, and hopeful always for our little girl. But we do realize we are fortunate by what is available to treat her.

    Several months ago, I was helping a local seminary college host a 5k run to benefit diabetes. Because the organization had restrictions on who they could donate money to (i.e no stem cell testing—but that’s another story), I was limited to goodwill organizations in place mostly to bring the care to those people who don’t have it. 

    I live in the south, on the eastern seaboard. But you would have thought, by how few potential benefactors I found based in the U.S. (we ended up choosing the IDF in Belgium), that I was living in one of those developing countries I was hoping to help. Either I wasn’t looking hard enough, or those places just don’t exist within our borders, which if the case, is just sad.

    Thank you, James, for sharing your experience with Life For A Child. You’ve inspired me to take up the cause once more. 
       

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