From tragedy to ‘Solace’: Sheeba Ameer’s journey of hope and healing

Meet Sheeba Ameer, the Kerala mother who turned grief into action, leading a movement for children’s health

By Sini Panicker

This world has seen thousands of mothers whose tragedies have transformed them into activists. From well-known author Isabelle Allende, who started a foundation in honor of her late daughter to empower girls and women, to Cindy Lightner, who founded Mothers Against Drunk Drivers (MADD) when she lost her 13-year-old daughter to a drunken driver, to Ja’Ka McKnight, who became an activist when she lost her son to gun violence, these mothers can be found in every community in every country around the globe.

They all have one thing in common: they have immortalized their unfathomable losses into gains and their tragedies into legacies by leading through change. Sheeba Ameer from Kerala, India, is a mother-turned-activist whom we should recognize and celebrate this Mother’s Day. She is the founder and leader of Solace Charities Inc., a non-profit that provides curative and palliative care and support to more than 5,000 poor children with life-threatening illnesses. The organization has 10 centers in Kerala, spread across the state. In the United States, it has half a dozen chapters that support Solace’s work by raising awareness and funds.

Sheeba, who goes by first name, returned to her hometown of Thrissur, Kerala, in 1998 with her daughter Niloufa and son Nikhil after spending more than a decade in Qatar. Her husband, Ameer Ali, a marine biologist, stayed in Qatar to continue his job. Sheeba was ecstatic to return to her hometown, but her happiness did not last long. Her 13-year-old daughter was diagnosed with Acute Myeloid Leukemia. “I was just an ordinary woman with a 12th-grade education. I was a housewife who knew nothing about this world’s problems. I had a nice, happy, and sheltered life until that moment,” Sheeba recalls. Her transformation began in that moment, from an ordinary mother to a brave mother, a pillar of strength for the sake of her daughter.

“We took Nilu to the best cancer hospital, the Tata Memorial Hospital in Mumbai,” Sheeba says. “She and I spent three years there for a bone marrow transplant and other treatments. That’s when I realized how fortunate we were. There were so many children whose parents could not afford the much-needed treatment. Several parents could not even afford to buy a meal or pain medication for their sick child. The situation was so depressing, so devastating. Seeing the terrible plight of children like Nilu, I wanted to do something for them, but I couldn’t do much.”

That’s when the idea of Solace began to emerge. “Solace was born out of my desperation to help those children and their families,” she says.

During a recent trip to the Washington, DC, area to visit the local Solace chapter, Sheeba spoke to Indian American author Sini Panicker. Here are edited excerpts:

Sini Panicker: Can you tell me more about Nilu?

Sheeba Ameer: That treatment worked, and Nilu was cured of cancer. However, there were many other health complications and crises. One after another. But she was a fighter, and she fought and lived until 2013. She was kind and caring. I remember Nilu encouraging me to visit another dying child named Abhishek. This is when Nilu had barely two weeks to live. And yet, she wanted me to go and console another child and his family. That was my daughter. She still gives me strength and courage to continue with Solace. Every day.

You had this idea of Solace in Mumbai in the late ’90s. ‘You mentioned that you were just a housewife back then, with no real-world experience or exposure. It is not easy to launch an idea and make it a reality. How did you do this?

I knew my limitations, so I became a student and did my homework. I began volunteering in 2001 at Thrissur’s Pain and Palliative Care Center, focusing on pediatric palliative care. I also realized I needed to be financially independent. So, I began a tailoring unit focusing on Muslim bridalwear. That place became a source of income and solace, not only for me but for a few other disadvantaged women as well. After seven years of all this, I felt ready. Solace was officially started in 2007 in that small tailoring place with a plan to support 15 poor children with life-threatening illnesses in the Thrissur area.

Just 15 children! That was your goal! Currently, Solace supports more than 5,000 children with medication and other help. What an incredible, uplifting, and touching story! Can you describe how Solace works?

Solace is a voluntary organization with a limited overhead cost. I can guarantee that 80 percent to 90 percent of your donation reaches these sick children directly. The care we offer is just not about the sick child. It is for the children and their families. The care can be divided into four tiers.

First and foremost, we provide funds to treat sick children. The money is used for surgery, chemotherapy, medication, etc. The second part concerns providing additional socio-economic help to that family, like meal kits, travel expenses for treatments, etc. Third, we assist with the care of siblings because they are often ignored when the parents spend every moment and every rupee on their sick child. We provide uniforms, school fees, book bags, and meals to siblings.

We also want these low-income families to be as self-sufficient. Thus, the fourth tier of our care package is a family-strengthening program through vocational training for parents, especially for mothers. We train them to produce marketable items while they remain at home caring for their sick child. I have seen hundreds of families where mothers become the sole breadwinners and caregivers as fathers walk out. This is a heartbreaking situation. The mothers are devastated about their sick child while being worried about the other ones or how to provide the next meal for the whole family – they can’t focus on getting anything done, and we cannot blame them. But we try to empower them. We also try to market their products as they don’t have any means.

How do you select children to be registered with Solace?

We do not select them. The children are usually referred to us by doctors in the hospitals. Sometimes, parents learn about Solace from someone else and approach us. We only ask for the child’s medical report to register them with a center. We have Solace centers in ten districts in Kerala. If urgent care is needed for the child, we immediately provide it. If not, a team of volunteers from that center goes to the child’s home to assess the circumstances before we help. We often find the circumstances much worse than what the parents described. The home could be a tarpaulin tent or a hut where the roof leaks. There may not be a bed. This is where a child returns to after chemotherapy and radiation treatment. Can you imagine? Thus, we provide funds to fix the roof or buy a bed. Whatever they need.

The statistics show an alarming increase in cancer patients, including children, in Kerala. Are there more organizations like Solace? If yes, how do you compare your services to theirs?

Palliative care institutions were already present in Kerala when I founded Solace. However, the parents would not send their sick children to those places, thinking they would be abandoning their children to die there. Once I learned the basics of pain and palliative care, I decided that Solace should operate differently. First of all, I wanted Solace to be a beacon of hope. I wanted to provide some funds that would afford treatment options. There is nothing worse for a parent than knowing that there are treatments available, but they cannot afford them to save their child. Secondly, if the child is terminally ill, I decided that Solace would send funds and necessary support to that child’s home. Thus, with Solace, these children will have recuperating days after treatment, or in some unfortunate cases, their last days, in their homes surrounded by their loved ones or in the hospitals near their homes.

Cancer treatments are free for low-income people at state government hospitals, medical colleges, and the Regional Cancer Center. However, the parents still have to pay for additional pain medications, antibiotics, and extra diagnostic tests. They will have to cover the expenses for meals and lodging. They become even poorer since they are not earning wages while caring for the child. So, yes, some organizations provide meals and shelter to these children and their families. However, I have yet to see an organization that functions like Solace. We continue offering the total care I described earlier – care for the sick child, siblings’ care, economic help, and a family-strengthening program.

You have spent every single day for almost 20 years with children who are severely ill and suffer in pain. You see parents who are deeply devastated and feeling helpless. Most people cannot do this even for a day. How do you work like this?

I did not start this organization to be charitable now and then when I feel like it. I was deeply pained and moved by the suffering children and their parents who could not afford to buy pain medication or a last meal for their dying child. I am a mother who helped her daughter fight leukemia for 16 years. I started Solace when her cancer was gone. But she became ill again. When I saw terminally ill children back then, I knew my Nilu could also die one day. She did. My daughter and I were inseparable. I was not able to imagine a world without her. And yet, I lost her.

That experience confirmed one thing I already knew in my heart – that none of us could save children with terminal illnesses. But we could offer treatment. We could make their last days comfortable and pain-free. We could help a child by providing medication to ease his body pain or headache. We could help a child who is continuously vomiting because her mother cannot afford to buy a prescription. We could help a child to sleep and rest easily after an operation.

You and the readers of this interview have to imagine these children, but I don’t have to – I see them every day. When a child is diagnosed with a severe illness, they lose everything – their home, friends, school, and even their family. Children do not need much to be happy. If they can go to the corner of a hospital ward to see other children playing with toys or stuffed animals, they will forget the pain from chemo. So, that’s what I did – I set up a play corner in the cancer ward at the Thrissur Medical College years ago. This is what Solace is all about. When I know that I can stop a child’s suffering, that I can help with his or her last months or days a bit more manageable and pain-free, how can I not do that? How can I walk away? I see my Nilu in every one of them. My pain from losing her is the fuel in me, and it is still burning within me. I donated myself to helping these children and their parents. Solace is a vessel for me to make that commitment happen. I do not feel broken. I am not giving up. I wake up energized and ready to help these children every morning.

Are there branches or centers of Solace outside of Kerala?

No. Solace is a Kerala-based, one hundred percent volunteer organization. It will not be easy to manage a center outside of Kerala. As the number of children seeking help from Solace increases daily, managing the existing ten centers has proven challenging, and fundraising has become even more challenging.

How do you raise funds? Do you accept government grants?

“We have not sought any government grants or funds. Our funds come from donations from individuals, private companies, and corporations. The 10 centers need six crores [approximately $718,000] annually; about 50 lakhs [roughly $60,000] are required monthly. About three crores are raised from Kerala. The rest is mainly donated from the USA. There are several organizations of people from Kerala here in the U.S. raising funds for us. We have also established a few city-based Solace Chapters in the U.S., including one here, in the Washington, D.C., area. We are transparent about our operations and are regularly audited. We invite our patrons and supporters from all over the world to visit our centers to see our operations firsthand.”

Not every nun becomes a Mother Theresa. Not every mother who has lost a child starts a charity organization. You belong to a one-in-a-million club where people like you have transformed heartbreaks into legacies. You have won so many awards for your work! You were a mother of just two children. Twenty years later, you have become umma (mother) not only to thousands of sick children but to their parents and to many others who seek your help with problems in their lives. Do you reflect on this transformation?

Yes, I do, from time to time. Sometimes, I cannot believe it myself. I was a carefree, tomboyish girl in my teens. I did not take life seriously. I did not have patience for anything – I did not even finish my studies. I was terrified of public speaking. However, I have always been loving, caring, and tender-hearted. According to my late father, kind and tender-hearted humans are the best. He knew I had these qualities. I have experienced a lot in my life and evolved accordingly; however, my tender, caring heart has stayed the same. It has made me enormously empathetic. It has driven me to start Solace. It has also helped me to enjoy nature – like summer rain, a pond with lilies, or a beautiful green meadow. Nature inspires me, and I can easily change into that young girl again. So, have I transformed much? I am not sure!

Your answer made me think about the beginning days of Solace again. Let’s go back once more. I am curious – what was your biggest challenge when you started Solace?

My biggest challenge was the strong opposition from my family, especially from my husband. When your partner doesn’t support you, getting support from the rest of the family and community becomes difficult. You would feel that the whole world is against you and your idea. However, I must say my son and daughter supported me. And my father, P. K.A. Rahim, who was seriously ill then, gave me encouraging words. He was a progressive thinker, a well-known publisher in Thrissur, and friends with the best and brightest of the literary and cultural worlds. I shared my idea with and sought help from the sons and daughters of these writers, artists, and activists from the circle of us, the second generation. I am forever indebted to these friends who became ardent believers in me and Solace. They have stood by me all these years.

What challenges do you face right now?

Fundraising is the biggest challenge these days. I began Solace with a plan to support 15 or 20 children. They became hundreds, and now, there are thousands of children that we support every month. More and more children and their families are coming to Solace centers every day, seeking help. Some families arrive from distant districts where we have no centers. It is heartbreaking to say no to any of them. We try to help as many as we can. It is equally sad to stop sending treatment funds when the children turn 18 years old. We provide treatment funds for up to 18 years only. What becomes of them – we don’t know. I worry day and night about all this, but my biggest worry is running out of funds every month. But I also believe in people, in their humanity. We have the most outstanding volunteers, a great panel of Solace Trust and Advisory Board members, and generous supporters who believe in Solace and what we do. I count on them. To donate to Solace Charities, please visit the website of the U.S. chapter.

Postscript: Sheeba Ameer concludes the interview with a smile that gleams with hope and conviction. Here is a mother, I thought, who started the interview by saying she was an ordinary woman once. She has now become mother extraordinaire. Sheeba is a tour de force who inspires us to be the best version of ourselves. She is a revelation of what we all could be and should be, which is to be there for one another. She epitomizes the resilience of the human heart, a mother’s heart. Here is a mother who has become a solace to thousands and thousands of mothers. Celebrating Sheeba Ameer this Mother’s Day is an honor and privilege, as she deserves our love, support, and highest admiration.

(Sini Panicker, a U.S. government scientist, is the author of Sita: Now You Know Me and its Malayalam version, Yanam Seethayanam, a novel based on the Ramayana in Sita’s contemporary perspective, inspired by the # MeToo Movement.)