The clinic provides health services to our thalassaemic children & a safe friendly environment for their treatment
Free blood transfusions
Nursing care
Some limited assistance with travel costs, as and when funds are available
A clean, comfortable environment – the clinic has a TV and shows educational videos to the children during transfusions; for many of them this is the only time they ever see a TV
A point of contact for advice and support – the only lifeline available in Nepal for poor families affected by thalassaemia.
Before the clinic there was nowhere for any of them to turn for help and advice.
Patients at the Nepal Thalassaemia Society
Desperate new patients frequently come to the clinic, having heard by word of mouth that there may be help available. Many walk for days to get there being unable to afford even the most basic forms of travel.
Some patients travel hundreds of kilometers and up to 24-72 hours by bus for every transfusion.
NTS provides some assistance with travel costs for the poorest families, but does not have the means to provide travel costs for all.
There are many thalassaemia patients who never make it to Kathmandu at all due to the high cost of travel and overnight accommodation.
The standard procedure these days is for the patient / carer to call the clinic the day before so that the blood required can be arranged. We aim for each transfusion to take just a few hours to avoid the chance of patients having to sleep out in the open overnight on the street should they miss their bus.
One of the goals of NTS is to be able to provide basic hostel accommodation for families so that they do not have to sleep rough each night they are in Kathmandu.
We would also like to provide travel expenses that range from £2 – £20 per family depending on the distance. At present these are only supported in extreme cases of poverty.
Patient stories
Kamal is a thalassaemia patient in his twenties who now works at the clinic as an admin assistant.
Six years ago Kamal walked through the gates of the clinic on Christmas Day. He was so disfigured and ill he could hardly walk; he was badly jaundiced, breathless and exhausted. He had heard a rumour that there was a place that could help him in Kathmandu but did not know where it was or how to find it.
Kamal managed to borrow the £15.00 bus fare and took the 3-day journey of 600km over the mountain foothills of the Himalayas to Kathmandu. Had he not done so, he would probably not be alive today. NTS knows of only one other thalassaemia patient in Nepal who has reached his or her twenties.
Some of the Nepalese families we care for have more than one child with thalassaemia.
Sarasuti and Niru are two sisters who come from a very poor family.
Their father is a porter and earns just 500rs (the equivalent of £4.00) per day. He works a 14 hour days and is often away from home for weeks at a time leaving his wife to manage the girls treatment.
Having free treatment at the clinic is a massive help to them but even paying for the journey there is a strain and many times the girls have to miss their transfusions so their parents can put rice on the table.
NTS would very much like to be able to offer the girls and their parents help with their travel and accommodation so that they never have to miss their life saving treatment.
Sunil and Anil Rai are brothers from Chitwan, 8 hours from the clinic in Kathmandu. Their father is a simple farmer but has no land of his own, he is a laborer and earns just 300rs (£2.50) per day. Sunil and Anil have now had to leave their family home to live with their aunt and uncle in Kathmandu to be near the clinic. It is heart breaking for both the children and their parents as they can only come together as a family at festival times. Both of these boys have thalassaemia.
Ayush and Ashish live on a very remote mountain ridge that was destroyed by the earthquake in 2015 many hours from Kathmandu.
Their mother and father carry one boy each once every 2 weeks to walk to the clinic to receive their transfusions.
In the enormous 8.4 magnitude earthquake that hit in 2015 the family were left with devastating loss. Their home and most of their livestock was lost, Ayush was trapped under their fallen ruins for many hours leaving him with terrible injuries. This family was hit in the most tragic way, no home, no buffalo, no chicken or goats… how could they ever survive.
They slept out in the open beside the ruins of their home with nowhere else to go for many months just grateful to be alive. Eventually NTS were able to get supplies of corrugated tin up to the remote area and a temporary shack was built. This is where the family remains to this day.
In April 2016 Wendy, her 7 year old son Taal, Durga and the clinic nurse made an epic journey of compassion delivering a fine female buffalo bought by donated funds to NTS to the broken family. This buffalo brought a pivotal improvement to this family’s life … fresh milk for the boys, manure for the rice fields and of course the ability to swap produce for other essential food requirements. Wendy stated that in all her time in Nepal she had never met a family so down on their luck. The immense importance of having livestock in these rural areas was never clearer.
In July this year NTS were extremely proud to be able to send the family the funds required to rebuild their new home. NTS are now very much taking care for the family and watching the boys’ health closely.
NTS also received a significant personal donation for chelation treatment for an already disfigured Ayush. The past has been very hard for this family but the love for their children has driven both parents to not give up in the face of the most extreme difficulty.
Chelation treatment
Currently only a very small handful of the NTS children are able to have chelation treatment due to the high costs of the medicine. The transfusions provided by NTS are keeping them alive – for now – but slowly, invisibly, the iron is building up in their frail little bodies. Without chelation, their hearts and other vital organs will inevitably start to fail. With the average monthly adult income in Nepal being just £20-£40 per month the £30 per month cost of chelation medicine is just unaffordable.
NTS has been working incredibly hard and continues to this day to try and seek individual sponsors for each child’s medicine. Now that the clinic is fully established our aim is to put into place the provision of essential medicine. The average cost of this is £30.00 per child.