Not treating diseased as if they are deceased | Daily News
Heal WEll :

Not treating diseased as if they are deceased

Maneesha meets President Mahinda Rajapaksa.  Pictures by Tennyson Edirisinghe

Health is wealth. You have heard it a dozen times but until you or a loved one is fading or broken, you do not consider the value of this statement. This is especially true when the person under life threatening medical conditions happens to be a child. The pain and confusion etched on their faces as they undergo treatment and face difficult situations are heart wrenching especially because we realise that they have so much more to live for.

Yet there is nothing we can do medically to keep them alive for more than a few months. However there are ways in which you can assist your child face the final horizon with courage, grace, peace and happiness with a little help from ‘My Wish Foundation,’ Sri Lanka’s first and only charity organization that grants wishes to children with life-threatening medical conditions.

An offspring of USA’s ‘Make a Wish Foundation,’ ‘My Wish’ aims at making magical memories for terminally ill children and their families to last a lifetime. Founded in August 3, 2009, ‘My Wish’ is headed by Nelum Arachchige. First Lady Shiranthi Rajapaksa is its patron while Indrani Weeratunga is its adviser. Well known faces like Ravindra Randeniya, Swarna Mallawarachchi, Saranga Dissasekara, Suraj Mapa and Gayathri Dias are ‘My Wish’ goodwill ambassadors. They have also joined hands with leaders of all religions since they do not look into the religion, ethnicity or cast of the children while granting wishes.

“Creating an unforgettable experience for the child and his or her family is our ultimate goal and the final outcome is an incredible experience that enriches not just the lives of the children and their families, but often our entire community,” Arachchige spoke about the healing touch that ‘My Wish’ has over the children and their loved ones.

Common mistake

Maharagama Hospital
Cancer Specialist
Dr Lakshman Obeysekera

Nalin Perera
Unlike ‘Make a Wish Foundation’ which only grants children’s wishes, ‘My Wish’ has taken one step further and also helps out financially in trying to get medications and treatments. They initiated the ‘My Wish Medical Fund’ with this purpose in mind.

“Even doctors in the ICU contact us when they need medicine for terminally ill children. We do not provide them with the money but purchase the medicine for them so that we can keep track of our records,” she said.

After a ‘terminal’ diagnosis has been given, one common mistake many patients and their families make is dwelling too much on the difficulties of the not-too-distant future. This threatens whatever happiness that may still be possible. Worse, it has the net effect of putting everybody through the loss twice. Families often feel helpless before the onslaught of fatal disease.

“Mothers are especially affected by this situation they become full-time carers for the child. They sit on plastic chairs for 24 hours beside their child. Some of them even sleep on mats beneath their child’s bed. Parents sell most of what they have to save their child’s life and endure many difficulties,” she said adding that such situations inspired them to build a Cancer Support Centre near Maharagama Hospital.

Fund raiser
The team will hold a concert to raise funds for this purpose. Reputed vocalists like Pandit W D Amaradeva, Deepika Priyadarshani, Athma Liyanage, Damayanthi Jayasuriya, Sunil Perera, Romesh Sugathapala and the Marians will perform at the event which is titled ‘Marians-My Wish Hadaka Pathuma 2.’ The concert will be held at the Sugathadasa Indoor Stadium on March 22 at 7 pm as a Marians 25th Anniversary special dedication. It will be compered by Kelum Srimal and Saranga Dissasekara. Theja Iddamalgoda has been involved in the designing aspect of the show. ANCL is the print media sponsor for ‘Marians-My Wish Hadaka Pathuma 2.’

“We held the first ‘Hadaka Pathuma’ concert in February last year at the Nelum Pokuna theatre to create awareness about the project. We are returning this year armed with more experience. The Cancer Support Centre will provide a place for mothers to take a bath, have a decent meal and take a nap before returning back to their child’s bedside. The hospital ward houses 30 children and is equipped with only two toilets and two shower rooms. The mothers too have to make use these facilities. Around 90 percent of them are from areas outside Colombo,” Arachchige explained adding that ‘My Wish’ has taken on the chore of training play therapists, play assistants and counselors to look after the children.

Worthy cause

The first Wish child Tharuni

My Wish President Nelum Arachchige
and Deepika Priyadarshani
Speaking about the up coming concert Marians band leader Nalin Perera said that the artistes who are taking part in the project engage in the work as an act of goodwill.

“We are fortunate to be blessed with the love of the public and in turn we need to do our bit for a worthy cause of this nature. This is an act of humanity. What matters is not the money we spend but the love we bestow on these children,” he said.

“I have encountered many moments in which people derive happiness by meeting me.

This is a simple deed we can do on behalf of a distressed soul. We request our fans to spare a few moments and join us in giving hope, strength and joy to another living being,” Deepika Priyadarshani noted.

First wish
‘My Wish’ has granted a countless number of wishes throughout the years. Eight-year-old Tharuni from Welimada was ‘My Wish’s’ first ‘Wish’ child. She had been suffering from an incurable brain tumor and only had a month to live. She wished to visit the zoo, a magical place filled with animals which she had seen in books but had never visited before.

As the opening song in Disney’s well-loved fairy tale Pinocchio states “If your heart is in your dream, no request is too extreme,” Arachchige has to keep on telling the children to voice more wishes when they have chosen them to fulfill their dreams.

She says, “Our children are so innocent. They are content with receiving something small like a toy or a trip to the seaside. I have to keep pressing them to ask for more so that I too am satisfied that the child has asked for something sufficient.” One such example is Dumindu from Anuradhapura who suffered from leukemia. His wish was to have a watermelon. Later after much cajoling he asked for a plate of fried rice and a red toy backhoe. Little Maneesha who was suffering from a spinal cancer was granted her wish of meeting the first Citizen of the Country, President Mahinda Rajapaksa, last year.

Limited resources
According to Maharagama Hospital Cancer Specialist Dr Lakshman Obeysekera around 80 percent of the children who suffer from leukemia live to become adults. Some of them even recover if they are given accurate treatment. The foundation cannot reach individuals from far off areas yet because they have limited resources. They need more sponsors and people with compassionate hearts to join hands with them for this venture.

“We train the volunteers to form a network. If you do not like to fund the child through us, volunteer to sponsor the family by yourself. It means lot to them because they are burdened by hardships,” Arachchige expressed.

‘My Wish’ also celebrates the birthdays of terminally ill children with their ‘Birthday Trolley’ concept. They visit the ward with goodies for everyone and even prepare a birthday cake for the birthday girl or boy. Hilton Hotel and Taj Samudra Hotel provide the delicacies free of charge.

“If a child dies the money in their bank account go to the Central Bank. This is wrong because people send their money into that account to grant a lifeline for a child. The money should go into saving another child’s life,” Arachchige stressed adding that they are hoping to take steps to resolve the matter.

“We refer to ourselves as the most compassionate nation in the world but we do not focus much attention on our own children. We cannot depend on the government alone to take on these chores. Make about 10 more charity organisations of this nature and that will be sufficient to carry on the task,” she concluded.


 

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