We have a new blog to celebrate Mothers Day. Long time supporter of both The Pendsey Trust and The Dream Trust, Mary Hayes, reflects upon her own experiences with Type 1 and her visits to our partner clinic The Dream Trust in Nagpur and how these have differered over the years. Mary states that the situation is improving, but there is still a long way to go.
The first mothers of DREAM Trust children I met in 1999 made a real impression on me.
I was diagnosed with Type 1 Diabetes as a young child, I therefore am aware from my own experiences of the impact diabetes has on life. I knew from my own childhood diabetes what a full on role it is when your child has type 1 diabetes, not only of the strict medical regiemes, but the constant monitoring and anxiety it introduces. Mothers at the DREAM Trust clinic had so many more challenges to face, compared to those my own mother. In addition to the lack of money available to purchase life saving insulin and testing strips, these families already faced extreme poverty. Many of the families I visited were living in inadequate accommodation, often nothing more than a tarpaulin sheet used as a roof that was placed up against a wall; clean water and electricity were a distant dream out of the reach of many. Both parents and children were illiterate and therefore had no job prospects other than the hard, manual and low paid work they were doing that comes with long hours and no time off. Diets caused a further problem, as food was bland and many children were already malnourished and lacked the adequate nutrition required for health and growth.
Another major problem these mothers faced was lack of understanding and belief in what they considered to be western medicine. Many people in their villages believed that they should not give their children insulin and that they should give traditional herbal remedies, those approaches considered “alternative” in the west. Mothers had to be brave and strong to keep giving the insulin to their children as lack of insulin would have meant certain death. Herbal remedies do not work with Type 1 Diabetes.
In a further visit to The Dream Trust in 2012 I was impressed to see how much the situation had changed. Some mothers had refridgerators and would store insulin safely for their own child and also other children with diabetes who lived nearby. The temperature in this region of India can often reach 48c, it is hard to imagine life without a fridge to store insulin safely, or even having to call around to a friend in another village to collect the next vial of insulin. All families The Pendsey Trust support were at the time provided with a clay pot to store insulin in the home, this is known to have some limited effect. The Pendsey Trust supports children to receive insulin at no cost to them, but identified that once insulin is provided, it is rendered unsafe by the extreme heat. Storage of insulin was a major problem, so refridgerators are now provided to help overcome this obstacle. It is great to know that these mothers now no longer have to struggle to find safe places to store insulin, a problem my own mother never had to worry about. Unfortunately, many children still live in inadequate housing, so it was not possible to provide fridges to all, as they do not have electricity or running water, often to their villages never mind their individual house. These families store insulin in a muddy brick, then inject a solution into their child that has been soaked in mud, the health risks here do not need stating.
Thankfully, FRIO UK have kindly worked with The Pendsey Trust to provide a sustainable solution for all mothers, who now no longer have to worry about safe storage of insulin. Not only do these donated bags keep insulin cool, but they do not require refridgeration to be effective, families simply soak the bag for a few minutes and the evaporation process keeps the contents of the bag cool for several days. Families who do have a fridge have also been provided with a frio bag as they are portable and can be used to take insulin safely to school, college or work.
The levels of literacy have also improved. Dr Pendsey himself has noticed that the majority of the families he supported in 1999 were illiterate, not only the parents but children who were not in school and faced a bleak future. In 2012, it was great to see that all the children were in school, pre-school or college depending on their age. In 2017, Dr Pendsey stated that now, even many of the parents are literate and some of the children speak English as a 2nd language. Thankfully, through The Pendsey Trust’s scholarship scheme, Type 1 Diabetes is no longer a reason why a child should pull out of school, but it is even a motivation to do well in life and become successful.
I believe boys are still favoured in India and I have heard it said there ‘no one wishes for a daughter but everyone needs a mother.’ With the help of The Pendsey Trust the girls are receiving free insulin and are growing up to be strong independent women. Grants for uniform, books and bicycles to get to school are provided. Further grants for setting up in business, purchasing sewing machines, or funding nurse training to name but a few. The initiatives The Pendsey Trust have set up not only provide a sustainable solution to extreme poverty, but they also address gender inequality. I am confident that with continued support, these young people will go on to have successful and fulfilling lives, to do that we need your continued help.
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A little goes a long way in India:
£2 can pay for a travel grant to clinic for a whole year
£5 provides a case to keep testing kits, a school bag, school uniform and paper/pencils for school
£5 allows a young woman to start a wholesaling spice business
£10 supports a young person to go to school for a term.
£16 pays for medicine for 1 month
£40 pays for school for a year
£40 buys a bicycle, enabling a young person to safely get to school from remote villages over rough terrain
£70 is the average cost of business start up materials
£125 pays for a refridgerator
£150 – £200 pays for university or college for a whole year