He’s only seven years old, but already Anil has faced so much.

Programmes Officer Shabina Sadiq found her first visit to Leprosy Mission projects in Sri Lanka to be a deeply affecting experience. Read on as she tells her story.

My trip to Sri Lanka was my first overseas visit since starting work at The Leprosy Mission this year. I knew it would be eye-opening, but I’m not sure I was prepared for just how much it would affect me.

One of the key people I met on the trip was Rev Joshua, director of Kaveri Kala Manram (KKM), one of our partner organisations in Sri Lanka. He took us on a visit to a small village called Kristokulam to meet the residents, many of whom are affected by leprosy. While there, we were introduced to Diaya – a teacher at the local school – and some of her students.

Diaya started to tell us a little about what life is like for children in Kristokulam. She explained that around half the children in her class of 34 students have been diagnosed with leprosy – a shocking statistic even in Sri Lanka, which in 2015 had the highest rates of new child cases of leprosy of any country in the world*. Then, she introduced us to Anil, a seven-year-old boy who has recently been diagnosed with the disease.

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Anil (centre), with his friend Kulendran and their teacher, Diaya.

Anil was a shy boy who kept looking at his feet as he constantly touched at the leprosy patch on his face – a patch of lightened skin that he was obviously very self-conscious about. It struck me how thin he was, so we asked Diaya whether the children were getting enough to eat.

“Their families don’t have enough food,” she told us, “So they might only be eating one meal a day.”

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Radhika, 14, is currently taking multidrug therapy (MDT) and is fortunate to have no lasting physical effects unlike her grandparents, who are both severely disabled by leprosy.

The school has been trying to help the children by providing them with a meal of lentils every day but I was shocked to see how small a portion they were being given. It’s all the school can afford.

“Malnutrition and leprosy make the children constantly weak and tired,” said Diaya. “They’re unable to concentrate in class and it affects their learning.”

Many of the children are taking multidrug therapy (MDT) to cure their leprosy. They need to be strong so their bodies can fight the disease and that means they need good nutrition. But with food as scarce as it is, that’s not easy.

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Kulendran, who is also seven years old and in Anil’s class. He’s currently taking multidrug therapy to cure his leprosy. His father is also affected by the disease.

Like many children in the region, Anil’s father went missing during Sri Lanka’s recent civil conflict and has never returned. Rev Joshua told us that Anil continues to be deeply affected by this. When I asked Anil about his hopes for the future he explained that he wants to be a policeman because he then might one day be able to find his dad.

It broke my heart to hear what had happened to Anil when he was diagnosed with leprosy: his mother and stepfather completed rejected him and threw him out of the house. I’m very close to my young nephews and it upset me so much to think of what it would be like for them to be shunned by their own family.

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Anil and his grandfather

Thankfully, Anil’s grandparents took him in and are doing the best they can for him, but life is hard for them. His grandmother is disabled as a result of leprosy so she finds it difficult to carry out everyday tasks like cooking. They have no income – and so every day Anil relies on the small meal from the school food programme.

That’s why, this winter, you can do something amazing for Anil and children like him. We want to provide them with parcels containing food packed with essential nutrients that will help them grow strong as they take the medication they need to cure their leprosy.

It costs just £7.50 to buy a food parcel lasting a month – an opportunity to start making a huge difference in the life of a child like Anil. We need to act now to ensure a brighter future for these children. They urgently need our help.

I left Kristokulam with a heavy heart. There is so much more than leprosy affecting children like Anil – hunger, rejection, the loss of loved ones. In just seven years Anil has had to go through so much. But together, we can help him and his classmates turn their lives around.

*WHO statistics

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Jenny’s Nepal blog: Final reflections

Blue mountains, Nepal
Blue mountains, Nepal

Saturday 22 November

God is alive and well and living in Nepal.

Please don’t misunderstand me. I am not being flippant. We were in church this morning and the presence of God was so strong. Apparently the Nepalese church is one of the fastest growing in the world at present. The church was filled with passionate, worshipping people.

The language is different but the people are the same. The culture and the clothes are different but the Spirit is the same. Some of the songs we recognise, some are different – but hands are raised and the Spirit is the same.

A widow just stood up and thanked the church for paying all the medical bills for her husband when he was ill. His death left her with mounting debt but the church paid it in full.

Love in action: that is what we are seeing on a daily basis, and I know it doesn’t just happen here. Mike Griffin says that he feels Anandaban is a ‘thin place’, a place where heaven meets earth. If there is a reason for that, it has to be, in my opinion, because there are so many people here ‘being Jesus’ to the people around them, and the air is filled with their prayers.

Sunday 23 November

My husband is reading a book called When helping hurts: How to alleviate poverty without hurting the poor…and yourself. A strange title but reading it has changed my perspective on how to make giving and helping the poor more effective in the long term.

As far as I understand it, the book suggests there are three ways of helping the poor. Firstly, relief, in response to an obvious crisis – like giving food, clothes and blankets. Essential, and possibly the easiest one for us as individuals to participate in.

Secondly, rehabilitation, which takes the needs of the person one step further, taking them back to where they were before the crisis by working together with them.

Thirdly, development, where the potential and the desires of the person are developed and they regain control of their lives, much like the self help groups we have seen. This type of help is relational and takes much longer to achieve as changes within communities comes very slowly and at a price to those involved.

The book also suggests that it is difficult for one organisation to achieve all three types of help. From what I have seen, The Leprosy Mission does all three very successfully.

The relief work – the first aid treatment, if you like, at Patan Hospital. The rehabilitation via reconstructive surgery at Anandaban, and the physiotherapists working to teach people how to use their hands, teaching self care, and taking control of their lives again. The development work of the self help groups which grow into cooperatives, income generating loans, scholarships for education…whatever the individual wants for their life.

The fact that The Leprosy Mission does all three may be a miracle but it is envisioned by those willing to step out and take a risk, and it is worked out over the years with patience, diplomacy and love.

What a testimony to the love of God and the inspiration and power of the Holy Spirit.

Flower in the grounds of Anandaban
Flower spotted in the grounds of Anandaban Hospital

Monday 24 November

We are nearly home and I wonder how things will be different for me after such a trip. It’s a question that has been asked by all of us in the group during the last few days. Whatever the change is, will it last, and will it benefit others?

I hope so. I don’t know what the future will bring for any of us but I know my perspective on life, and what matters, has changed. Things have been brought into sharper focus whilst other things seem strangely far less important. The journal I have been writing this blog in has this phrase on the front cover: ‘Be the change’.

I guess that is the message I am taking home with me today. Whatever my or your circumstances, we can ‘be the change’ where we live and work, and across the world. Yesterday by sheer coincidence was the 57th anniversary of Anandaban Hospital opening. We had a celebratory service, and one of the staff shared a bit of the history of the place. Apparently someone in the Nepalese army had a son who had leprosy. He instigated help from the Mission so that his son could be treated. To cut a long story short, the work was founded in the forest a few miles away from Kathmandu, and they called it ‘ the forest of joy’. It all began with one man’s need. One man’s request.

Everything starts with one person. A small idea mushrooms into something large that influences millions across the world. We just don’t know what God can do with us when we are willing.

Be the change and see what He can do.

You can purchase Jenny’s paintings from her trip to Nepal, created as part of her ‘Painting A Day’ project. They’re priced at £26 plus £5 postage. Go to Jenny’s Facebook page to find out which paintings are still available and simply comment to say you would like to buy one. Proceeds go to support our work.

World Refugee Day – displacement in South Sudan

Today is World Refugee Day and the The UN Refugee Agency has announced that the number of refugees, asylum-seekers and internally displaced people worldwide has, for the first time since World War II, exceeded 50 million people. Its annual report on the global displacement situation shows that 51.2 million people were forcibly displaced at the end of 2013 – 6 million more than in 2012.

“We are seeing here the immense costs of not ending wars, of failing to resolve or prevent conflict,” said UN High Commissioner for Refugees António Guterres. “Peace is today dangerously in deficit.”

Undoubtedly, one of the countries contributing to this dramatic increase is South Sudan, where an estimated 1.3 million people have had to flee their homes as a result of the conflict that began last year. Peace talks in Ethiopia have so far failed to stop the fighting, and numerous ceasefire deals have collapsed. Thanks to our South Sudan appeal, we have been able to provide emergency relief to the leprosy community in Juba. Food, blankets and agricultural tools were distributed to around 500 people.

Emergency aid is distributed to the Luri Rokwe leprosy community in Juba, South Sudan.
Emergency aid is distributed to the Luri Rokwe leprosy community in Juba, South Sudan.
emergency aid
Displaced persons with disabilities have many additional needs which can make life even more challenging and full of hardship.

But in neighbouring Jonglei State, many residents of the leprosy community of Malek are still living in temporary shelters on an island in the river Nile, displaced from their own homes. At the beginning of February we received the sad news that two women from the village were killed. They were severely disabled and unable to flee their homes with the rest of their community. One of these women has been named as Mary Nydiang Chuck. The village’s chief, Gabriel Maduor, was also shot, but survived.

This month, TLM’s country leader in South Sudan, Yousif Deng, has visited the community – his first visit since the conflict began and accessing Malek became impossible. In the nearby town of Bor, some NGOs are providing healthcare but access to the region is still limited. At the time of his visit, there were concerns about outbreaks of cholera – a major problem for many camps in South Sudan, where disease is rife and sanitation facilities are limited. Most of the population has been displaced, either internally, or to Uganda, Ethiopia and Kenya.

“On 4 June, I managed to visit Malek leprosy village. Along the way there we saw burned cars, deserted houses, and burned down homes. There was a huge armed presence and several checkpoints,” Yousif told us.

Of the 38 residents of Malek that we met on a visit in 2013, just 13 now remain the village. Families have been separated as many people are still living on a nearby island across the river Nile. One of the residents we met in 2013 was Rachel Aluong Joh.

“I have lost my son during the crisis. I have not managed to see his grave,” she said.

Rachel went on to tell Yousif about the death of Mary Nydiang Chuck.

“We heard gunshots all over, and some armed men came running into our place. One young man was so angry; all of a sudden he started shooting randomly and it was unfortunate that Mary was shot and died. There were no young men to bury her – we were not able to dig a grave for her’’.

Rachel Aluong Joh, standing, speaks about the impact of the conflict on her community.
Rachel Aluong Joh, standing, speaks about the impact of the conflict on her community.

Yousif was able to provide some food to the community, but they still have many needs – food, blankets, cooking utensils and fishing nets so they can catch fish from the nearby river. There are no nearby healthcare facilities, and many people require medicines, bandages and dressings for the wounds that can be caused by lack of adequate self-care in people affected by leprosy. We will be providing food aid in the near future, and will continue to support those affected by leprosy as they attempt to rebuild their lives. World Refugee Day is a day to reflect not just on those displaced in South Sudan, but the many people affected by leprosy worldwide whose lives have been made even more challenging and fraught with danger as a result of conflict.