Dilan Shah has been sponsoring a child, Gaurav, through The Pendsey Trust for the last two years. As part of his fundraising, he took the brave step of climbing to Everest Base Camp!
This November, he had the opportunity to visit our local partner in India, DREAM Trust, to meet Gaurav. The DREAM Trust is run by Dr Sharad Pendsey, whom The Pendsey Trust is named after. Dilan tells us about his life-changing journey.
I started Type 1 diabetes medication sponsorship for Gaurav, a young child living in a village near Nagpur, India, during 2014. Upon commencing this sponsorship my bond with Gaurav began to build as I received periodic updates of his health and education. Gaurav had sent some drawings (a passion of his) and I had sent Gaurav some pictures over the last few years. It was my ambition to meet Gaurav, as well as Dr Pendsey since I started medication sponsorship. During November 2016 my wife and I travelled to India, with meeting Gaurav being one of the highlights of our trip.
We spent the morning at Dr Pendsey’s clinic, and had the opportunity to spend time with Dr Sharad Pendsey and his son Dr Sanket Pendsey, Seema Chalkhore (lead dietician/diabetes educator) as well as several diabetic children. What struck me was that although they were at a doctor’s clinic, they were smiling and happy.
Dr Sharad Pendsey gave us the background of why he established DREAM Trust and spoke about the reality of Type 1 Diabetes management for most children/young adults. Dr Sharad Pendsey joined his father’s general medical practitioner clinic in Nagpur and he established the first specialist Diabetes centre in Nagpur in 1983. He saw many children and would prescribe them medication for diabetes, but the children rarely came back to see him. The reality was that death occurred within months as the family couldn’t afford the diabetes medication which would keep their children alive.
In 1995, Dr Sharad Pendsey established DREAM Trust and began by personally sponsoring diabetes medication for 5 girls. DREAM Trust aims to provide insulin to poor people with diabetes, prevent complications, research for a better future and provide a scholarship system so that patients will be able to gain employment and be able to fund their own diabetes medication as adults. However, the funding need was much greater than Dr Pendsey could personally meet and through raising awareness he started getting sponsors from India as well as from overseas. In 1998 he published an article “Where have all the girls gone?” in the UK British Diabetes Association magazine, which evoked a tremendous response and donations from UK families.
Dr Pendsey noted his gratitude for the strong support provided by Lucy Laycock. He spoke of how she went to his Diabetes Clinic in Nagpur by chance in 2011, and after seeing the work of the clinic, she established The Pendsey Trust upon returning to the UK. Dr Pendsey highlighted that unlike the majority of DREAM Trust’s strong supporters, Lucy doesn’t have a close link to diabetes or India, but still felt so motivated to help young diabetics.
Currently Dr Pendsey’s Diabetes Clinic has around 50,000 registered patients. Type 1 diabetic patient numbers are less than 2,000, and the majority of these are DREAM Trust beneficiaries, which implies that their family income is insufficient for self-funded treatment. The diabetes treatment costs INR 15-20k (approximately £200) annually which is around half the household income (INR 20-50k) of DREAM Trust beneficiaries. This high relative cost of medication means that the reality is families are unable to afford the healthcare themselves which keeps their children alive.
DREAM Trust provides insulin and syringes for all patients in need, because otherwise patients reduce insulin doses which leads to ketoacidosis/hospitalisation. Patients receiving sponsorship for medication also receive blood glucose monitors/strips and travel expenses to the clinic, with some children also receiving scholarships for school fees, an area which The Pendsey Trust has focused on helping DREAM Trust to develop. Dr Pendsey tries to motivate children to complete school, and wants young adults to train for a particular skill, which will mean that in the future they will be able to self-fund their medication. He is extremely proud that some of the beneficiaries of DREAM Trust have now completed education and started technical jobs, and have now themselves donated to help other young people in need.
Meeting Gaurav
Gaurav’s home is in a village outside Nagpur city. To make it easier to find, Gaurav’s father came to the Nagpur clinic and our driver followed his scooter. Gaurav was so happy to meet us, and had been too excited about our arrival so he couldn’t go to school that morning (although he later showed us his school attendance record, which showed strong attendance!) Given our pending visit, Gaurav, his best friend and some cousins were all standing outside awaiting our arrival.
We exchanged gifts with Gaurav; I gave him a cricket bat. He was beaming with joy to have a branded cricket bat; similar to most Indian boys, we knew Gaurav enjoyed cricket! My wife also gave Gaurav shading pencils. He was so happy to receive them as we knew his passion for drawing/painting from the sketches he had sent previously. Gaurav gave us a painting of my wife and I from a wedding photo that we had sent last year. He also gifted us musical instrument models that he had made with paper and matches. His artistic talent is fantastic!
I spoke to Gaurav about his diabetes. He said that he has been injecting himself since his diagnosis. Currently he is on four injections daily – breakfast, lunch, dinner and before bed. I compared medication with Gaurav. Although I am now on an insulin pump, I keep insulin pens as a back-up. Gaurav uses similar insulin pens, and syringes as back-up. Although we had similar insulin pens, given cost constraints, needles are re-used by all Dream Trust recipients 6-8 times (which means they are not as sharp), whereas UK guidelines/supplies allow me to change needles after every use. Gaurav and my blood glucose monitors were similar, although again due to cost constraints Gaurav is only able to test approximately once per day, whereas I am fortunate to be able to test at least 5 times per day.
Gaurav is studying at an English medium school, and he was the only child/young adult we met during our visit to Dream Trust who was able to converse with us directly. Most children living in/around Nagpur attend Hindi or Marathi (both Indian language) schools, therefore being unable to converse in English. Gaurav is the first person in his family able to speak English; and he showed us his school test report which showed his strong academic results. Gaurav was donated a bicycle by Pendsey Trust in 2014, and subsequently has been riding 30 minutes to reach school – he noted although previously he went by mini-van which was quicker, he prefers cycling and it is good exercise!
Although both Gaurav’s parents are employed – his father works in an office and mother teaches Hindi in a government school- low income makes diabetes medication unaffordable. Their home was better relatively speaking to the homes of many children helped by the clinic, with two rooms and a kitchen, for their family of six – Gaurav, his younger brother, parents, aunt and older cousin brother. However, what struck me was their home doesn’t have running hot water, with water boiled on a coal/wood fire outside because the gas or geyser cost would be too expensive.
Gaurav wanted to make use of his new cricket bat, and we played cricket in the street – you wouldn’t be able to do that in London! We both batted and bowled, with Gaurav definitely the better player – it had been years since I had played cricket.
It was great to finally meet Gaurav, having been a boy when I first started sponsoring his medication, and to see him having now grown into a healthy young teenager. I consider Gaurav to be my little brother, and he was so grateful that we went to meet him. Gaurav’s parents (via translation from DREAM Trust staff) thanked me for sponsoring the medication which is keeping their child alive. This was really humbling for me because it’s saddening to think without the DREAM Trust Gaurav wouldn’t have survived after developing Type 1 diabetes. I really hope, that with the continued support DREAM Trust provides Gaurav, he will be successful in the future.
Sponsoring medication. even if only for one child has given me satisfaction, and I am very glad that we got this opportunity to meet Gaurav.
Dilan Shah
Sadly, many children like Gaurav remain in desperate need of sponsorship to ensure that they have access to lifesaving insulin. Recent reports from our local partner, DREAM Trust, suggest that up to two new children arrive at the clinic in need of this support every single week, and as a consequence we have a growing waiting list prioritised by need. If you would like to donate to The Pendsey Trust or to sponsor a child, please get in touch at hello@thependseytrust.org.