We arrived in Addis Ababa, Ethiopia at 5 in the morning after flying 19 hours and stopping in Dublin on Air Ethiopia – which other than the food and the movies – was wonderful.
Driving to our hotel we couldn’t help but compare the sights out the window to Haiti, where we have helped conduct a camp for children with diabetes every year since the earthquake in 2011. Addis Ababa is congested, chaotic, filled with shanties and shacks, but much less so than Haiti – and due to its elevation, without sweltering heat.
Remarkably, the Ethiopian clock is 6 hours behind the international clock, the year is 2010, and the New Year starts in October. Despite an unexplainable calendar, almost everyone who is educated is fluent in English, which is taught starting in kindergarten.
After settling in, we were on our way to see Ethiopia with a guide and our host who runs the Ethiopian Diabetes Association. We saw mountains, churches and pilgrims who wait outside the church for holy water.
The next day work began; we gave 8 lectures, answered hundreds of questions, and were delighted to meet and work with 50 physicians and nurses who were clearly dedicated, educated, and motivated to be the best caregivers for children with diabetes.
This includes the 3,500 children and young adults who receive their care and diabetes supplies for free through Life for a Child, led by the indefatigable Dr. Graham Ogle from Australia. Graham is the reason we went to Addis and he has been a terrific coworker, travel partner, and friend.
Many of the children with diabetes are in a coma when they are diagnosed, and it is likely many more die before that. Remarkably, while the exact incidence of type 1 diabetes in Ethiopia is not known, it is clear the rate of new cases is increasing – and in some areas of the country, this increase is felt to be astronomical. Diabetic ketoacidosis post diagnosis requiring hospitalization is quite frequent, confirming the challenges of managing diabetes in such a poor, stressful environment.
As part of our lectures, Neal interviewed children, teens, and young adults with diabetes and some of their mothers.
Each had an amazing story. One of the young adults was so angry after his diagnosis by the limits his parents imposed on him, he stopped eating for over a month. Despite wasting away, he told no one what he was doing (his parents thought it was his diabetes) until he collapsed. The resolution came when his parents realized he might die if he wasn’t given back control of his life.
Another young adult told us of unrelenting bullying and shame, and of how her parents were encouraged to stop giving her insulin and to cure her with holy water. Others described hiding their diabetes, having teachers force them to do pushups in front of the class despite being hypoglycemic, refusing to believe a child could have diabetes, and of health care providers unable to the make the right diagnosis until they entered a coma.
But for the most part, these were horror stories of years past. Now, due to the Ethiopian Diabetes Association, a better Ethiopian health care system and economy, and because of people like Graham Ogle and the efforts of Life for a Child, things are at least a bit better.
There are monthly education classes for families, support groups, camps (they bring children as young as 4 to overnight diabetes camps without their parents), media coverage of diabetes in children, and the Life for a Child program, which, of course, brought us to Ethiopia. The main issue that remains is that of insulin insecurity, coupled with an inadequate food supply. These children rely on Life for a Child – the program is literally keeping most of them alive.
We flew north to the town of Mekelle, in the state of Tigray – close to the Eritrean border (the Ethiopians don’t talk much about the brutal war with Eritrea). There we met the Regional Health Minister, the lead endocrinologist in the area, and the most determined person – a public health nurse – we have ever met. The nurse, called sister in a throw-back to ancient times, is focused on getting enough insulin and supplies to the region so that people will “stop suffering and dying”. First, we went to the relatively-sophisticated regional hospital with three ICU’s (adult, pediatric and neonatal), surgical suites, a laboratory, and one of the busiest diabetes clinics we have ever seen.
Life for a Child doesn’t have the resources to support many of the young people in this region so many families are faced with some terrible challenges. When they have enough insulin, the patients all take shots of regular and NPH insulin two times a day and use the same syringe for a week. None of them have glucose monitoring equipment, or even urine dipsticks. Without Life for a Child, they pay a few dollars for a bottle of insulin that they store in pots of wet sand (most people do not have refrigerators). Those few dollars add up and are more than most can afford – so they skimp on the amount of insulin they take, and as a result, they have elevated glucose levels likely all the time. That is except for the times when they take insulin and don’t have food, in which case they have episodes of severe hypoglycemia.
From Mekelle, we drove 2 hours to a small village called Abi Adi to visit a health center that serves the 500,000 people from all the surrounding rural areas across the country’s northern region and border. They have perceived a huge rise in diabetes incidence – 3 new patients a week over the last few years, mainly in adolescents and young adults, but in children as young as 9 months of age. It was one of the poorest resourced health centers we have ever seen, but with the most incredible and dedicated staff who had handwritten amazing notes, developed a registry of all new patients, and who have amazing diabetes knowledge considering the resources they have and the challenges they face. The staff are on the left of this picture and our tenacious nurse second from right, with patients in the middle surrounding us and Graham.
They conducted a small study that showed the mean A1C was >11% (the study paid for the only A1C tests these patients have ever had) and the mean fasting glucose was 235 mg/dL — too high, but probably better than other similarly resourced hospitals. If we had thought insulin insecurity was a problem in Mekelle, it is a log-scale worse in Adi Abi. When we arrived, they were busy resuscitating an emaciated 15-year-old girl in Diabetic ketoacidosis with IV hydration (without an IV pump), with finger-stick glucose and urine dipstick measurements, and with no other lab tests. She had sores on her feet that weren’t healing, no muscle mass, and stunted growth. But the doctors were ecstatic they could save her life that day.
Our ride home was across the same incredible landscape – the entire countryside we passed through was terraced, spotted with small wooden huts covered with aluminum roofs and there were cows, donkeys, goats and camels grazing or just standing in the middle of the road. The rifts, gorges, and hills we climbed up and down were striped with orange, yellow, and brown colors from the eons of sedimentation that formed this area – which is the beginning of the great Rift Valley where Lucy once roamed.
The 3,500 children in Ethiopia with diabetes who receive all their supplies and care for free from the Life for a Child program are in danger. In fact, all of the 18,500 children in 40 countries across the world who are supported by Life for a Child are equally imperilled because the program needs funds. It needs to raise money, firstly, to continue to provide care for the children currently enrolled and secondly to expand and offer more insulin, more supplies, and take care of more children in need. We cannot let Life for a Child flounder or fail; we cannot even imagine the fate of these children – and all the children yet to come – if that happens. Please help us keep the amazing children we met in Ethiopia alive by donating to Life for a Child.
Fran & Neal Kaufman
Life for a Child supports over 200 young people living with type 1 diabetes across Jamaica. One of those young people is Bill, a seventeen year old student from Kingston, Jamaica. The Diabetes Association of Jamaica recently sent us this story after one of their staff members had a chat with Bill and his Mom about his diagnosis, school and camp.
Bill is no different from his peers, in the way he looks and behaves. However, he is different……He was diagnosed with type 1 diabetes when he was four years old. Bill’s Mom explained how her son was first diagnosed with diabetes:
“He fractured his right elbow when he was four. We took him to the hospital where they did surgery on his elbow. It lasted nine hours! Shortly after that, he started drinking a lot of water and losing a lot of weight – around 12 pounds! Then the most dramatic thing happened. He started wetting his bed. We took him back to the paediatrician who did some tests. The tests showed that he had diabetes. He was admitted to hospital where he stayed for two long months and we learned how to manage his diabetes.’’
How did he feel after he was diagnosed? I asked Bill’s Mom.
‘’At first he was shy about it. He would cry, become sad and feel different from his friends. Many of the kids didn’t know about Bill’s condition, but the teachers certainly did, and were aware that they should call me if anything was amiss. It was hard to accept at first, that an apparently normal, healthy child at birth could develop diabetes. But as years go by, I realised that Bill has diabetes for life, and you have to learn to live with it as best you can. It’s a long road but there’s a lot to give thanks for. Bill has done very well over the years and his last admission to hospital for his diabetes was when his father died eight years ago”.
Being a single mother is demanding, however Ann-Marie says she has coped because her job provides flexible hours. Over time Bill’s initial sadness and disappointment with having type 1 diabetes has eased and his mother says that his attitude and mood has improved. ”The real change came when he attended a camp for children and young people with diabetes. Here he saw so many other kids with diabetes and he became more accepting of his condition, and felt less alone”.
Bill told us how much he enjoyed camp; “I’ve been to Camp Yellowbird twice. It was a good experience! I felt very comfortable, imagine, everybody the same…everyone has diabetes. I didn’t feel odd! And I met some interesting people. I have a lot of friends, at school and outside” says Bill. He describes himself as easy going and very sociable.
Bill says, “I feel I manage my diabetes quite well. I follow the guidelines given to me by the Diabetes Association of Jamaica. I eat healthily, I take insulin injections every day, I get counselling from time to time and I visit my specialist doctor every six months for a check-up”.
Bill has applied the discipline he has learnt in managing his diabetes to his academic life at high school. Now he is in the lower 6th form, he realises that there’s a vast difference between fifth and sixth form work. A very independent, confident young man, he is a high achiever. He excelled in the CSEC exams with 11 subjects. Focusing on the sciences in lower sixth, his aim is to become a medical doctor. He believes with hard work he can earn a scholarship.
Bill loves sport, and in particular, football and is a keen supporter of his school’s team, so he was thrilled with his school’s recent 2-1 win in a critical match in the Walker’s Cup. He firmly believes in the importance of physical activity. He swims and was a member of his school’s swim team up to last year. He has his own routine of exercising, doing push ups.
Bill is very interested in outreach and has been named the Diabetes Association of Jamaica’s Youth Ambassador. He is anxiously awaiting his first assignment!
Your donations make it possible for Life for a Child to provide Bill with essential insulin, supplies and diabetes education. There are still many children that need our support, make a donation today.
Many of the children supported by Life for a Child face a number of challenges in addition to the management of their type 1 diabetes.
We recently received this story from a supported center in Rwanda which shows that sometimes, unfortunately, these challenges can prove insurmountable.
‘’Claude remembers nothing about his life before 1994. That was the year of the Rwandan genocide which resulted in more than a million deaths and many thousands of others others being exiled to neighboring countries.
Claude was among those Rwandans who fled the country that year At just three years old he found himself in Kampala, Uganda, living with a family thought to include his uncle – He did not remember his parents as he was so young.
While he was growing up, his ‘’cousins’’ went to school, while he was treated as their servant. He began to doubt the relationship with the family because he was treated very differently. He suspected that these people found him during the genocide and lied to him that he was their family member.
When he was 14 years old, Claude started to lose a lot of weight over a short period of time so that his family thought he had the HIV AIDS virus. Instead of helping him by taking him to the hospital, they decided to send him back to Rwanda.
While he was very sick and being taken to the bus station, he realized that the family had never looked after him as they did with their other children – he could be given away once he was no longer useful.
When Claude reached the border between Rwanda and Uganda he was in a coma. The Ugandan police took him to the hospital in Uganda where he was diagnosed with type 1 diabetes. He was passed between the Ugandan and Rwandan police. Within the following year, the Byumban police in northern Rwanda kept him at the police station where he lived between the hospital and the police station. He had many admissions to hospital because his diabetes was not well managed.
While Claude was in Byumba hospital, he met the team of Rwanda Diabetes Association (RDA) who explained how they could seek help for him through Life for a Child sending life-saving insulin and supplies which would allow him to manage his diabetes. Claude was given a glucose meter, glucose strips, insulin and syringes and diabetes education resources. In a short period of time, with regular support from Life for a Child and RDA he was able to improve his blood glucose with no admissions to hospital.
Claude registered in the government’s poverty program, which was building a shelter for the most vulnerable people. Claude was given a house in that program and married the following year. A baby soon followed and he, his wife and baby, lived together happily.
However, Claude wasn’t able to earn enough to support his family, so he again asked the RDA team for help. RDA helped Claude design a small income-generating project. He was collecting fresh milk using a bicycle to deliver milk to the city. He was then able to manage his business and care for his family. His dream was to see his son grow up in better conditions.
Despite the challenges of his life, he did not develop any complications. However, sadly, Claude died of hypoglycemia on 25th August 2017. His wife and neighbors took him to the hospital but it was too late.’’
Claude’s story courtesy of the Rwandan Diabetes Association and illustrates the dreadful challenges that many young people with type 1 diabetes face in less-resourced countries.
Life for a Child is working with RDA to stop tragedies like this happening. We developed a Diabetic Ketoacidosis (DKA) campaign in 2012 to raise awareness of the signs and symptoms of type 1 diabetes. Posters in Kinyarwanda and French were created and distributed locally to community health centers and hospitals. This has helped health professionals to act quickly in treating and managing type 1 diabetes.
Life for a Child has been supporting RDA since 2009 with insulin, test strips, blood glucose meters, diabetes education and mentoring from international experts with expertise in type 1 diabetes in young people.
You can help us support and advocate for young people like Claude, make a donation today.
”If it wasn’t for Life for a Child the story of Type 1 Diabetes in Liberia would only be expressed as mortality rate. Management of diabetes at the individual level is beyond challenging due to pervasive poverty resulting in food scarcity and the inability to purchase insulin” Augustine, our man on the ground in Liberia.
Life for a Child has been supporting children and young people in two centres in Liberia for the last six years with a third centre recently joining the program. Augustine reports;
”Prior to the partnership, there was no systematic way for children with diabetes to obtain routine care for their diabetes, or a regular supply of insulin, syringes and glucometers with test strips. Insulin especially is a scarce commodity in Liberia due to cost.”
Liberia is a country where chronic disease is rarely supported, with the Ebola outbreak being a recent priority for the health facilities. Other challenges include a scarcity of refrigeration and transportation problems. Patients visit the clinic twice a month to collect their insulin, sometimes from as far at two hours away, funding their trips by themselves. Over the years the clinic has managed nineteen patients, between the ages of 6 and 16 years old.
Life for a Child arranged for Dr Julia von Oettingen, a Paediatric Endocrinologist to visit the centre where she is a frequent welcome visitor to guide local diabetes management. Julia (far left) and Augustine (far right) are pictured here with some of the young people supported by the program in Liberia.
This work would not be possible without your generous donations. Support a child with insulin, strips and education for just a dollar a day donate now.
Life for a Child (LFAC) has commenced new work towards sustainability in diabetes care. For LFAC, two key pillars of sustainability include promoting health systems reform and encouraging advocacy.
Being engaged in health systems reform means to research and evaluate the changes/trends within national health systems in the countries that LFAC helps. Doing so helps us understand where the provision of diabetes supplies fits into changes within national health policies. The research in health systems reform involves study into various levels of health systems, including the national, regional and international platforms. Now is an important moment to engage with how national health systems are addressing diabetes care as the international health stage is focused on a) the epidemiological shift from communicable to non-communicable disease, and b) the promotion of universal health coverage and equity in health.
By gaining knowledge through the research done at the health systems reform level, we are better able inform the advocacy through evidence-based and tailor-made approaches for national circumstances. This work is being informed by complementary research being done by LFAC in epidemiology (particularly determining prevalence – the number of existing and projected future cases), and health economics (determining the most cost-effective approach for each country). Evidence-based and targeted advocacy can then be conducted by our country partners and, on a global level, by LFAC.
LFAC’s work in these areas works towards our Vision that “No Child should die of Diabetes”.
View Life for a Child’s Research and Impact page.
You can support this research by making a donation here.
James Ron, one of Life for a Child’s great advocates recently wrote about his son’s diagnosis and why he supports the program:
“When our two-year old son, Sacha, was first diagnosed my wife, Emma and I scrambled to figure out how to get him the help he needed – long and short-acting insulin, syringes, test strips, Glucagon, HbA1Cs, etc. etc. – we wondered, “how do parents in poor countries cope?’
We were blindsided by the disease, but we also benefited from access to a medical hotline staffed by excellent diabetes educators. Our local pharmacy, moreover, was open at all hours, and never lacked for supplies. Although the medicines were expensive, we could make it work. How, we wondered, did this kind of resource-intensive care get delivered to parents and children living in places where the medical infrastructure was limited, where medications were often unavailable, and where refrigeration for insulin was expensive, or even non-existent?
To learn more, I took a trip in 2010 with Life for a Child to a clinic they support in Nagpur, India, accompanied by two of my son’s pediatric endocrinologists from the Children’s Hospital of Eastern Ontario. I learned first-hand how difficult it is for parents who make only a few dollars a day to keep their children with T1D alive. Sure, T1D parents and patients have it difficult in North America. Yet our struggles pale in comparison to those faced by parents living on modest incomes in India, Sudan, Mexico, and the 39 other countries where Life for a Child works.
Since that trip in 2010, my wife and I have done site visits to medical clinics supported by Life for a Child elsewhere in India, Morocco, Rwanda, and Mexico. My wife is a member of the US board, and I help out whenever I can. I can attest, through personal experience, that this is a well-run, bare-bones organization that wastes not a single penny. It partners with pharmaceuticals when it can, but requires the help of many individual donors to survive.
From his office in Sydney, Australia, Life for a Child General Manager and Co-founder Graham Ogle has carefully managed the provision of life-saving medical supplies to over 18,000 children worldwide for over 15 years. He is the most hard-working, trustworthy, and dedicated man I have ever met. Indeed, his peers know that Graham is an amazing guy; in 2013, his life of international service was recognized by the American Diabetes Association.
Please help Graham and his colleagues do all they can to get insulin, syringes, test strips and more to parents around the world. Without our help, these parents will struggle to keep their children alive and in good health.
Recurring monthly donations are particularly important, as they will give Life for a Child the financial stability it needs to plan ahead, assume responsibilities, and keep the support flowing from one part of the global T1D community to another.
The global T1D family is all in the same boat. Some of us, however, have better oars than others; we should help out when we can. Please consider giving a recurring, monthly donation to support a child with insulin, syringes, BG test strips and education materials. You can donate here.’’
James Ron, Harold Stassen Chair of International Affairs, University of Minnesota
I live in Chimaltenango in Guatemala and I am 16 years old.Eight years ago I started to lose weight, I was very thirsty and urinated very often.
My parents were very worried so they took me to the local hospital where I had tests and I was told I had type 1 diabetes. There was no specialist so I was transferred to the Roosevelt hospital.
My mother had diabetes too, and when we were told the cost of insulin and supplies we didn’t know how we would be able to afford supplies for us both.
The doctor told us about the local diabetes association, and we were immediately given test strips, glucometers, syringes and insulin, together with a book to understand diabetes that was a great help for me and my family.
I have received so much help from the diabetes team and the association since being diagnosed. We still face an uncertain future as my mother has chronic renal failure and my father is very unwell.
However, I have brothers and sisters who look out for me, and I take responsibility for my diabetes. I see many small children being diagnosed and I want to help them and teach them how to look after themselves as I do.
You can help families like Mildred’s navigate their way from diagnosis to management by donating just a dollar a day to provide insulin, supplies and diabetes education. You can make a tax deductible donation here.
Thank You to the Diabetes Online Community!
Over $22,000 was raised by Spare a Rose during 2017, enabling Life for a Child to support 369 young people with the insulin, tools and education they need to manage their diabetes.
Our Education Director, Angie recently visited Colombo in Sri Lanka to see your donations in action. Watch the video above and see the difference support from Life for a Child has made in the life of Nuzaira. Her family could not afford the insulin or supplies she needed but with help from Life for a Child she is now doing really well, working as a nursery teacher and has a little girl of her own.
‘’There were heartbreaking moments along with heart-warming ones.’’ Angie said about her visit.
‘’One of the toughest moments was meeting Amila, a 22-year-old young woman who was diagnosed with T1 when she was 12 years old. She is dealing with multiple complications, and the devastation on her mother’s face was heartbreaking.’’
Life for a Child is working with the National Diabetes Centre to support Amila and her mother. We are striving to equip the next generation with the insulin, education and tools they need to live long and healthy lives.
‘’We also visited 19 year old Sandramina at her uncle’s apartment. She was diagnosed at the age of 11 and struggles with the constancy of diabetes management and her consistently high blood glucose levels. She relies on her family to give her injections and was very reluctant to move from a twice daily insulin regimen to four injections a day.’’
Angie encouraged Sandramina to start giving her own injections to help increase her independence. She also suggested Sandramina chat with other teenagers at the activity day, to learn how her peers approach their management, in the hope of helping to reduce her feelings of isolation, empowering her to move forward and face a positive future.
Your donations make this possible.
There are still many children that need our support to manage their diabetes. For just $1 per day you can support a child with full care – a blood glucose meter and test strips, insulin and education. Make your pledge today.
Last but not least……
The Life for a Child team would like to say thank you to the superstars who come together every year to make the Spare a Rose campaign happen. Kerri, Manny, Mike, Bennet, Jeff, Kelly, Ava, Renza and Grumps – thank you so much.
It was a sticky, humid day in Colombo, Sri Lanka when I met Kassun.
I was visiting the Sri Lankan Diabetes Association to meet young people supported by the program and the health professionals caring for them. The association had arranged for me to see the kids with the biggest challenges, none with HbA1c below 11.5%.
One of the first patients I saw was Kassun, he was diagnosed with type 1 at 6 years of age. He was a really bright young man, full of hopes, dreams and smiles but is struggling with the challenge of managing his diabetes. He has been admitted to hospital with severe hypos and in DKA many times.
Kassun doesn’t receive any financial support from his family and, as he struggles to find regular work, wouldn’t be able to afford his insulin and test strips if it wasn’t for Life for a Child. Thanks to your donations we are now able to help Kassun with his management, ensuring that he has access to a regular supply of insulin, education and support through the diabetes centre.
Kassun now thinks of the centre as his home away from home, and obviously feels very comfortable there. He would travel through the night on a bus from miles away, just to come to clinic and did so these on two consecutive days while we were there.
Team games and dancing
On the third day of my visit we held an activity day at the centre for sixty-six young people aged between 6 and 26 years old. At the beginning of the day the girls sat to one side of the room and the boys opposite to them – everyone was very quiet and no one mingled at all.
However, after a packed day of talks, small informal group discussions, team-building games and a parent Q& A session, things changed. Everyone was singing and dancing, laughing, chatting and having fun. This was so heart-warming to see and demonstrates the power of peer support. Kassun attended the activity day, and as one of the oldest in the group, he was always running around, generally helping and looking after everybody.
During my visit to the centre I also had the opportunity to visit the home of two sisters, Nuzaira and Nazara who have been supported by the program and are now doing really well. Nuzaira was diagnosed age 10, is a teacher and has a 6 year old daughter. She was very happy to chat to us and share her experiences of living with diabetes, she told us she once fainted in front of her class with a hypo – luckily the headmistress knew what to do to help her. The sisters and their mother made us feel very welcome and were so grateful for the support your donations provide.
For me, the visit really reinforced the importance of the support we give to these children in this wonderful but under-resourced country. Not only are we saving lives with the insulin we provide, we are making it possible for these young people to lead normal lives and follow their dreams to become teachers, carpenters, parents and doctors. Thank you.
At age four, Yasir was rushed to hospital in Karachi, Pakistan where doctors realized he was in Diabetic Ketoacidosis. He was diagnosed with type 1 and, for the next few days stayed in hospital with his parents.
Yasir comes from a poor family and lives in Karachi along with his parents and four brothers and sisters. His father is a laborer and his mother has her own business selling home-made snacks. Because of their low income and the high cost of diabetes supplies his family simply don’t have enough money to buy the insulin and tools Yasir needs to stay alive.
Your donations allow us to support Yasir by providing the basics he needs to manage his diabetes. This includes his twice daily regimen of short and long-acting insulin and the strips he receives when he attends clinic every month.
Yasir and his family get very frustrated with his diabetes and say that they ‘wish it would go away’. He attends school regularly and is in the expected grade for his age, although, he is shorter than his friends which makes him feel different. However, they realise that Yasir must take his insulin and monitor his blood glucose level to stay healthy.
Life for a Child’s Education Director, Angie first met Yasir in 2015 when she visited the National Institute for Children’s Hospital in Karachi, Pakistan. We are pleased to report that, two years later Yasir is doing well and these photos show him at his most recent clinic visit. He does, however, have persistently high blood glucose levels, and is undergoing testing for Coeliac Disease.
Yasir’s story is full of hope and is only made possible by donations from people like you.
Can you donate $30 to support a child like Yasir? click here.