The Sunday Leader

All For A Good Cause

The words of the Dalai Lama “Love and compassion are necessities not luxuries. Without them humanity cannot survive” filled the air at the Good Market recently.

Local superstars of the likes of Lahiru Perera, Dushyanth Weeraman, Stephanie Siriwardane and popular local bands such as Kurumba ,Magic Box Mix Up along with  the very new but talented Ryan Somaratne and The Anonymous and former Revelations chorister and TNL Onstage finalist Gyles Dharmaratne, all came together to Help Lisath Live – a new life. The latter was a charity event which took place at The Good Market at Race Course on the 17th of September 2016.

The Rs. 200,000 collected from this fundraiser went towards Lisath Chathmin Nanayakkaara’s Bone Marrow Transplant, to be done at Rajiv Gandhi Hospital India.

Little Lisath is just four and a half years of age and is suffering from a genetic condition called Major Thalassemia. He was diagnosed with this disease when he was just two months old and has been undergoing blood transfusions every two week since then. This is a genetic condition which causes the body to make an abnormal form of hemoglobin (the oxygen-carrying protein in red blood cells.) The disorder results in large numbers of red blood cells being destroyed, leading to a severe anemic condition. The disorder occurs in the offspring of two Thalassaemia carriers. There is no permanent cure for Thalassemia besides a Bone Marrow Transplant.

The National Thalassaemia Centre (NTC) in Kurunegala is the premier institution in Sri Lanka helping nearly 800 patients to battle the disease. The Centre is one of the largest centres of its kind in Asia where a large number of patients come daily for blood transfusions. There are over 700 patients registered at the NTC with over a 100 patients being added to the list annually.

Ghedora- Connects is a platform to voice the stories of the voiceless, with an aim of connecting those  in the country together, to create a more compassionate community, focusing mostly on the Colombo society which is becoming increasingly competitive and self centred. It’s only a facebook page made up of a few people from Colombo trying to make a change for the better in the smallest possible way they can. But this charitable community outfit has already had many projects to which the Good Market has been very supportive of as Ghedora-Connects is one of their fundraiser stalls. Lisath’s story was brought to Ghedora-Connects by Achala Madummage of The Good Market, who happened to go to school with Lisath’s mother Erandhika Dayaratne. Ms. Senanayake of Ghedora-Connects has been in touch with Erandhika Dayaratne since the 12thof July and been working on this project along with Achala since then. Through their projects they have realised that many individuals want to help others  but don’t have time or a reliable sources to do so. Most people rather help smaller projects that are being personally monitored. This is exactly what Senanayake of Ghedora-Connects does along with her small team. You can always like their page on facebook to know more of what they do.

Lisath is an only child and his young mother is doing everything she possibly can on her own to care for him and cover costs, because Lisath’s father left them due to his health issues. His mother Erandhika is only 31 years old and doing her best to keep her child alive, so that she can give him a fresh start to enable him to live his dream. Erandhika is a teacher at Vijayapala Maha Vidyalaya Matale. This struggle of being a parent of a Major Thalassemia child is double the agony when you have to do it alone and hence why Senanayake and Madummage are working tirelessly to bring Erandhika’s only wish for her baby a reality.

For all of you who are not aware, Thalassemia is a painful disease faced by many in Sri Lanka, mostly children. There are many babies born with it as it is a genetic disease and at the moment none of the public hospitals conduct the Bone Marrow Transplant. The only two private hospital that conduct this operation which is the only way for these children to lead a healthy normal life, are Nawaloka and Asiri Hospital. However the donor list is extremely long and finding a match is  very hard. Unlike in India, there is no Bone Marrow Registry where donors can be matched to the relevant cases faster. Some of the parents of children with Thalassemia along with the Thalassemia Unit have appealed to the public sector but no action has been taken to organise donors into a registry.

Lisath is on the Nawaloka donor list but as the success rate of BMT operation is very high in India the Thalassemia Unit had channeled him to both The Rajive Gandhi Hospital in New Delhi and the Narayan Health Hospital in Bangalore. As he has yet to find a matching donor in Sri Lanka but has two matching donors at Rajiv Gandhi Hospital in New Delhi, his mother is preparing for the operation in India. His mother had to depend on The Thalassemia Unit for communication with the hospitals in India as she is not fluent in English but now we at Ghedora-Connects and Achala are in direct communication with the Hosptial as this is a case directly known to us.

The donors are going under stem stell testing, which is the first stage towards getting a date for the BMT operation, next week. The results of this testing will be out in 3 weeks, thereafter we will be informed about  the exact date of the operation. The operation will be scheduled another 3 weeks after that. The total cost of this operation along with the post surgery recovery period of 1 month comes to a total of 25lakhs Indian Rupees. Currently Erandhika is short of 1.5 mn LKR for this transplant. The reason why Erandhika wants to go for this operation is because the longer children live with Thalassemia the more deformed they get. Their life span is low. Lisath is her only son and she wants the best for him, like any loving mother would. She wants to be able to help him live his dreams and get a good education and job. Ghedora- Connects set out on a mission on the 12th of July to show courageous young Erandhika, that there is still alot of compassion and humanity left in this increasingly cruel world. Lisath Chathmin Nanayakkara maybe only one out of a 100 patients battling Major Thalassemia but that one life counts to Ghedora- Connects – and it clearly meant the same to many of those who came and made a difference to this boy and his mother’s life by your financial contributions as well as those in kind.

This courageous young lady hopes to  help those parents who have with children diagnosed with Major Thalassemia to the attention of the public sector. Ghedora-Connects along with Good Market and Erandhika  hope  that this operation can be implemented at the Government Hospitals namely, The Lady Ridgeway Hosptial who are still discussing this topic and the Kurunegala Base Hospital, where the number of patients suffering with this genetic disease is the highest.

Ghedora-Connects and The Good Market would like to sincerely thank all those who contributed towards this worthy cause, with a special mention to all employees at Aitken Spence Travels, Selyn Handlooms ,Amante, Jeewas Polos and Far East Indonesian Cuisine for their heartfelt contributions. Along with  August by Mama Aida, Harpos Outlets, Yes FM, Neth Fm and Fox Fm for their immense support with promoting this event.

 

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