July 6, 2020

Sheeba Ameer’s SOLACE – A hope for cancer struck children

Sheeba Ameer is not an ordinary individual you would generally come across in life. After losing her grown up daughter to cancer, Sheeba started an organization, ‘SOLACE’ that assists and enables parents, children having cancer and even their siblings who might be neglected and helps them to deal with the grappling situation.

This is a story that would make you believe in humanity. A story that will hopefully make you do a little better than you have been doing until now for people unknown to you. Sheeba has been not surprisingly conferred numerous awards at the national and international level.

“We were blessed with two children, Nikhil Ameer and Niloufa Ameer. Our daughter, Niloufa Ameer, at her 13th age was diagnosed with leukemia AML after a prolonged illness. She had survived out from leukemia but the side effects of the treatment resulted in many complications, including weakening of vital organs. After a prolonged battle for life she succumbed to her illness and left for her heavenly abode on 27 August 2013. She was only 28 years old.

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It was our son’s bone marrow that was placed in Niloufa for her bone marrow transplantation. During her treatment which lasts for more than 16 years, our son Nikhil Ameer struggled hard in managing his education and childhood life. He always accepted the sidelining for her sister to get her back in life.   Presently he is working in Qatar National Museum, Qatar along with his father Mr. P.T. Ameer Ali who is also working there as a Marine biologist.

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I was born at Punnayurkulam and in my very childhood days, my father disposed his mighty ancestral property there and shifted to Thrissur for extending his activities. I was the second out of the five children and had my school and college education from Thrissur. I used to spend my whole time in a tight association with nature rather being a studious girl learning from books and classrooms. I still found the same pleasure in recollecting and reinstating those early days.

Soon after my pre degree, at an age of 18 years, I got married to Mr. P. T. Ameer Ali. I was bound to be his wife and was forced to leave from this gifted land to the artificialities of Qatar. It was a discomfort for me as far as the mechanical and luxurious life there and I always demanded a return to Kerala which was well beyond a question to get an answer.

Our life turned into a darker corner when our little angel at her mere 13 years, was caught under the claws of illness. She was admitted to Mumbai’s Tata Memorial hospital, Asia’s largest cancer treatment centre. There, on the hospital’s 11th floor (pediatric patients’ floor), we spent almost all her time, three years straight.

We were able to provide her the best treatment available and there was only one aim to get her back into normal life. There, I felt the most contrasting situation. I saw many children and their parents suffering from poverty. Many parents weren’t able to  afford even the food their ailing child needed. They wouldn’t be sure whether their child would live or not and yet they couldn’t stay by their child’s side — they had to go in search for money to procure their child’s life saving medicines. While we had my son’s bone marrow transplanted to her, the child on the bed adjacent to ours wasn’t getting access to the desired treatment. Such sights bothered me no end. It was from there I decided I must lend some support to such children.

Upon returning to Kerala, our daughter was still suffering from the side effects of the treatment. She had to undergo chemotherapy. With our suffering daughter on one side, I used to take part in the palliative activities of the Pain and Palliative Care Society, Thrissur, Kerala. That was my homework.

For seven years, I went there almost every day after tending to my daughter’s needs. I would spend time with patients of terminal illnesses and their families. I learnt to take complete care of a person diagnosed with cancer or any other life-threatening disease. I learnt to provide symptom relief, psychological support, moral support, and social help, so as to address all facets of the treatment process, apart from learning about the administrative challenges of running such a system. The experience I gained from there was my confidence and strength in starting “Solace” nearly nine years ago with a dedicated team of trustees and volunteers.

 

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My only intention was to do something for the children who are suffering from life threatening diseases and their families who are fighting with their destitute. At first, I thought if I could support 15 children, it’s good enough. Then that number grew in hundreds and now we support more than 1300 children suffering from Cancer, Thalassemia, , Nephrotic Syndrome, Hemophilia, Hepatitis B, Sickle Cell Anemia, Wilsons Disease, Rickets, Epilepsy, Cerebral Palsy, Hormone deficiency, Down Syndrome, Heart disease, Juvenile arthritis etc.

Basically, we provide children with life-saving medicines on a monthly basis. Regular home care visits are being conducted with our dedicated group of volunteers. In home care process, we will go to the child’s home, assess the condition there, the issues of the families and their surroundings. It is mainly through these home care visits, the needs to be met are being addressed.

We are conducting family strengthening programmes on a monthly manner which is fundamentally meant to empower these parents especially the mothers so that upon learning some small scale techniques, they can earn a little together with caring their child. Moreover, on a monthly basis a parent’s get together is also being conducted so as to create self-support groups.

In many families, if one child is caught into the hands of illness, the attention of the family certainly focused onto that child. His siblings will automatically get sidelined or even neglected while they are forced to look after the affected child with extreme care. This, sometimes make the child into an aggressive stage or will go into a state of depression. This is obviously a part of our responsibility in caring the siblings

I have actually gone through it all for 16 years. So I know how to care well. When a mother sits before me in our office and starts talking about her child, I can understand her before she completes her sentence.

Let me recollect an experience. Once, a woman brought her 11-year-old son who was suffering from juvenile rheumatoid arthritis, placed him on a bed and asked us whether we could register his case. This is an extremely painful, long-term chronic disease, and one look at the boy would tell you the agony he was in. I looked at his eyes and saw an intense pain in them. He was looking at me with immense anxiety whether he would get the medicines and the financial support or not. I held his hand and said, “Don’t worry my child, we will support you.” Two years later, the boy came to our office, sprinting and smiling. Many situations like this happen throughout. This is actually the highest acknowledgement for a volunteer who dedicate themselves for making these children to live.

What the medical practitioners are lacking in the system is taking the curative and palliative care hand in hand. The palliative care must begin with the curative treatment and it should go on continuously without losing the intensity. This should gain more strength where the curative part lessens and these two should be overlapped.

My daughter has always been my leading light, my angel girl smiling at me all time along with the stars, driving me in each breathe, spreading in me each moment. The memories as painful,  at the same time, we had given her the utmost care and I must share that in all her struggling days, she even used to make me available for caring other needy children who are suffering from life threatening diseases.  She has been a messenger where she has made me equipped for a noble cause, and strengthened me.”

(Seen in the pictures Sheeba with her two young children, years ago; Sheeba with her son and Sheeba Ameer with one of the children at the centre.)

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