Sreya never allowed illness to define her, say her parents. Image Credit: Supplied

There came a time in 10-year-old Sreya’s life when she couldn’t blink, or talk, or move more than a finger. Yet, says her father, Midhun Joseph Harry, “If you walked into that hospital room and asked her, ‘How are you?’ she’d give you a thumbs-up.”

"She, who wouldn’t let her two major illnesses define her, gives us the courage to go on today," the Indian expat adds. That is her legacy.

Sreya was 10 years and six months old when she passed away from a rare form of brain cancer last year. This is her story.

“When I was pregnant I was here [in the UAE] for about eight months, I was working. And then because we were new parents … I travelled back to India because I needed my parents’ support, I wasn’t confident enough. During the first scan there, doctors said there’s a mesenteric cyst [a rare abdominal tumour] in her,” says mum Soumya George.

While the couple was expecting a few investigative procedures once she was born, what they didn’t expect was the diagnosis of another rare condition: Congenital Adrenal Hyperplasia (CAH), which affects the adrenal glands. “We struggled with that for some time, but then she bounced back. And as parents our focus shifted to understanding the condition. After the first year, she started becoming like a normal child, she had her ups and downs always. Any small illness would become a one-week admission to hospital. It got to a point where the doctors also told us it might be better for her to take a break before she joined regular school,” she recalls.

What is Congenital Adrenal Hyperplasia?
Congenital Adrenal Hyperplasia is a rare inherited autosomal recessive disorder characterised by deficiency of one of the enzymes needed to make specific hormones. The form of CAH Sreya suffered from affects approximately 1:10,000 to 1:15,000 people in the United States and Europe. The disorder affected the adrenal glands, a pair of walnut-sized organs above the kidneys. The adrenal glands produce important hormones, including cortisol, which regulates the body's response to illness or stress. The deficiency translated into a weakened immune system, says her mum, Soumya George.

“When she started regular school, the cycle continued; she’d fall sick, she would spend three to five days in hospital,” she adds.

Here, the couple would see their little girl hooked on to an intravenous line that fed her a steady stream of antibiotics. “Luckily for us the CAH was always under control,” says Soumya – it was just that Sreya’s immunity seemed a bit low.

“We made sure we didn’t make her feel like she’s very different from a normal child – we let her play, we let her do everything, because we wanted her to be resilient. What we ourselves didn’t realise is how that perception of ours just made her so resilient that even smaller issues that she probably was facing never seemed to bother her,” she adds.

Sreya with her brother, Aditya.

One clip changed the world

When she was nine years old, Soumya noticed something a bit odd about her daughter’s breathing habits. “She started keeping her mouth open and we contacted many doctors and they said, ‘She’s always having a cold so it’s becoming a habit for her to breathe through her mouth’,” she says. But her mum, who was visiting just before the grounding on planes by COVID-19, seemed to share her concerns. “My mother told me, there’s something different about her, she seems too lethargic.” One day, as Sreya was talking, her mother recorded her conversation, which seemed stilted. “I sent it to her paediatrician and I booked an appointment. The moment her paediatrician heard her voice note, she immediately called and said, ‘I’ll tell you something else, don’t waste time coming to me, I’d recommend you go straight forward to the paediatric neurologist’,” she recalls.

They said it’s probably another auto immune disorder, says Soumya.

The first step to getting a diagnosis was to do magnetic resonance imaging (MRI).

“On May 23 we got the result. I remember reading the MRI and it having the word astrocytoma in it. And I knew ‘astrocytoma’ is a word used for cancerous things … We were just trying to figure out what to do and they called us to get her admitted and put her on one of the most difficult steroids. It’s very hard on the kids – it’s basically to reduce inflammation. We started on that treatment slowly. I told my husband, ‘cancer we’ll operate’, she will bounce back. But then they started telling us, ‘Sorry, this [Diffuse Intrinsic Pontine Glioma brain tumour] is fatal.’

“The doctors clearly told us across jurisdictions and countries – here, India, Australia, Switzerland, US – they all said, ‘This is fatal’. Of course, as parents you never want to accept that reality. So we asked what we could do. They said, ‘There’s no point in chemo, start off with radiation’. Radiotherapy, with things like breast cancer, is [treated with] 10-12 sessions; here it was 30. For a child that age, it’s quite intensive. She kind of understood that things were wrong. But she was like, 'I have one more thing and I’m going to bounce back from that also'.”

To talk about it or not?
Existentialist questions continue to haunt Soumya and Midhun. And they find themselves second-guessing their decisions. “One of the bigger challenges once we heard this was the decision of whether we should be telling her about her prognosis or not. It was a hard decision as a parent and something I still wonder whether we did right or wrong, because I’m not sure there’s a right or wrong answer here but when you know that you are dying, wouldn’t you want to know that you are dying and these are your last days? At the same time, when you tell a kid that you are dying … we decided not to tell her because as a child it would have freaked her out as well. Which is something I wonder – what if someone could have told me what the right answer is?” says Midhun.

The steroid they prescribed, says Soumya, makes you put on weight, it causes mood swings, and it makes you very hungry. And even as Sreya underwent her gruelling radiotherapy sessions, the doctors warned that this fight was just about buying time. “This is not going to bring her back, it’s just going to give you some time to make memories. I had heard this a million times until then but as a parent I still thought no, we’ll find something,” she says. “So she finished her treatment but she had become very depressed, because it had physically changed her – she was otherwise a thin, regular-looking child, and she suddenly put on so much weight, her face changed, her looks changed, she lost hair, she’d become quiet.”

Sreya in September 2020
Sreya in September 2020 Image Credit: Supplied

Still, her parents tried to get her to adapt to her new reality, to engage with the world. And it was working, she says. “Then I joined these Facebook groups so I could find information from people sitting around the world. When I started reading those accounts – real parents writing down real issues that they face, the real experiences, we understood what was coming. I had kind of accepted by then. My husband still hoped,” she says.

In May of 2021, Sreya’s condition began to worsen. “By May she was having difficulty walking, her speech started changing, she was slurring, by end of May she started reducing her mobility on her own. Whenever we would go out she’d be sitting in her brother’s stroller because she couldn’t walk long distances, but we still went out. We did whatever we could do, went wherever we could go as per the COVID-19 scenario. And by June-mid she started losing mobility on one side. By July she was on a wheelchair,” Soumya says.

On August 4, Sreya was admitted to the hospital with a fever that seemed to keep spiking. “By this time, Shreya was so immobile that unless you were watching her continuously, you wouldn’t even know she had any trouble. She wasn’t in a state where she could show us any difficulty by any movements or anything. So one of us would always be sitting up and watching what she’s doing,” she recalls.

Sreya needed hospice care, says Soumya, but that’s something the world is woefully ill prepared for. “People don’t understand that hospice is not just limited to elders or geriatric patients, but also sometimes much younger people… like, she [Sreya] was in a vegetative state, she was just lying down; she couldn’t turn on her own, she couldn’t speak, she couldn’t even utter a sound … Globally, there is a lot of confusion about how to handle that and it requires serious thought and study. Because it’s not specific to us – it could happen to many people. We as parents helplessly saw our child wither away – and there was nothing we could do.”

The whole family sreya
The whole family: Aditya, Midhun, Sreya and Soumya.

Fever raged through the night

One night in August, as Soumya waited by her bedside having sent her husband for dinner, she started to hear a rattling sound – it was coming from Sreya. “I felt there was some trouble she was facing. So I called him back, but nothing happened. After that her fever started spiking. I was watching her and they kept giving her things – paracetamol, morphine – it just didn’t seem to be bringing the fever down. They put cold compresses. Somehow, you feel it coming. By the morning, it became very bad.

"At around 8.30 in the morning, it was over. My last recollection was her last breath - because that’s the best she could do and it was over,” she says.

“He has accepted that Sreya chechi [big sister] is not coming back,” says Soumya, taking about Sreya’s younger brother, five-year-old Aditiya. “He never asked us why.

“But his teachers tell us that he’s become a very sensitive child. So we try really hard to work with him and give him confidence now and he’s still fairly like a regular child – he tries to do things himself. He has his tantrums … but during that whole process, he had stopped doing it. As a four year old he realised that something was so terribly wrong that he shouldn’t create added pressure,” says Soumya.

Nine months on, the family is still reeling from their loss. “It’s not something you can get over, but it is something you learn to live with,” says Soumya.

Midhun says: “She has actually been closest to me. She was attached to me, so one memory is hard to pick because there are so many good memories. But always, travelling with her has been the best; she wants to explore, she wants to do things, she’s always looking for travel opportunities.

“Just last to last week, we went out and this was one of our first outings alone and we just saw that travel was no longer fun without her. She was so much part of the experience, because she was not there, we felt we were not doing it right.”

The void remains – but so does Sreya’s legacy. “People can stay so brave,” says her dad.

Treatment took a toll on Sreya, causing her to gain about 10kilos in a matter of weeks.

Memory of a superhero

-By Soumya George

Once, Sreya, my 10-year-old daughter, chose to recite the following verses for her moral education class in school:

“I don’t think you could ever feel,

All the love I have to give,

And I’m sure you never realised,

You’ve been my will to live.”

I was amused at the choice of verse and I playfully teased her on whom it was about. To my astonishment, without even a second’s hesitation, she answered that those verses reminded her of me. I was touched and yet equally surprised – because both for me and my husband, the reverse had always been true.

Sreya was my eldest child and I have always been proud of her. My pride was not rooted in her academic or extra-curricular accomplishments. Instead, my pride rose from her exceptional resilience, strength of character and persistence.

As an adult and parent, I had convinced myself that my kids will draw upon my values and courage. Sreya was a contradiction to this premise. She has, through her life, made me question these fancy notions that society nurtures in us. Today, I modestly acknowledge that children are the best teachers of creativity, persistence, and unconditional love. Sometimes, they remind us, better than any leader, artist or philosopher, how simple and beautiful life can be.

Sreya was a cheerful, bubbly, and strong-willed child. She was born on November 9, 2010. A tomboy by nature, she loved playing football and cricket. Soft cuddly toys, dolls, dress-up games or imaginary tea-parties never interested her. She was a protective and affectionate sister who cared for her brother with unusual maturity and patience. When Sreya was born, I had fancied that I would dress her up as my own little doll. But these fantasies were soon to be crushed by the strong resolve of my spirited baby. Sreya could go to any party donning a T-shirt paired with her favourite blue denim jeans. She preferred her Skecher shoes to any fancy, glittery sandals. By rule, her hair could only be styled as ponytail. She never enjoyed fairytales with damsels in distress. Instead, she aspired to be a Marvel superhero (her Dad was an exception; he was her Superman - a Justice League superhero). She looked and behaved like a regular 10 year old, who loved magic, Harry Potter and Geronimo Stilton books. Her life mantra was fairly simple - go to school, have fun with her friends, cuddle with her brother and coax her Dad to buy her goodies (of course without telling mum!).

Sreya with her brother.

Amidst all of this, Sreya was well-aware that her reality could never be so simple. She knew her health was not her trusted companion. It had played spoilsport multiple times and she missed many fun- occasions at school. She was aware that she had had a major surgery at birth. Funnily enough, that was not a traumatic event for her. On the contrary, she proudly displayed the scar to anyone who was willing to see. Sreya was also diagnosed the rare genetic disorder called Congenital Adrenal Hyperplasia. As parents, we shuddered at the diagnosis. But for her, the disease meant just a few things – blood check-ups every three to six months, a daily set of steroids and may be a few days of hospital admission every year. It didn’t have to stop her from striving for anything. Being an intelligent girl, she even used it to her advantage sometimes. She believed in living life king size. She was my real-life story of a survivor. Unfortunately, I didn’t realise that this was just the beginning of the story, and the climax was due to come.

The year 2020 changed the way the world looked at health. Everything changed – the way the world learned, worked and even celebrated. COVID-19 made staying at home the norm and health a constant worry. But that was not Sreya’s story. Her narrative was always different. It had to be more shocking and dramatic. The universe was about to give me some new life lessons – many of which I had probably heard a million times and yet never totally understood.

In May 2020, Sreya was diagnosed with an extremely rare form of brain cancer – Diffuse Intrinsic Pontine Glioma – a disease with 100 per cent mortality rate and zero curative treatment options. Doctors looked at us with compassion and told us to ‘make memories’. Our best prognosis was to have her around, for another 12-18 months.

In my desperate attempt to learn more about the disease, I scouted for all information I could find, just like I did for her prior diagnosis. At this stage, I was shocked to realize that Neil Armstrong’s daughter died of the same condition in 1962. And unfortunately, there are no significant developments to help the patients since then. It was puzzling to me on that for both diseases, the improvements were slow to develop. Even more frustrating was the disparity of treatment options and diagnostic procedures across countries.

With an ailing heart and constant prayers, in June 2020, we started one and half month of radiotherapy sessions for Sreya. Each radiotherapy session involved her being tightly screwed onto a table while she was subjected to high doses of radiation to kill cancer cells and shrink the tumour. While she underwent the treatment, she was also administered a heavy dose of steroids. The treatment and steroids had strong side-effects. Nonetheless, she persevered. She fought hard and rose like a phoenix.

By August, she was her happy, bubbly self again. She found new passions and interests. She adjusted to her ‘new normal’, with no help at all. COVID and her own health created limitations for her, but she didn’t need any guidance on how to work around them. Her ordeals didn’t break her spirit. She restarted classes in her second term, made sure she earnestly did all her assignments and exams like a regular kid, without complaining. Remarkably, her classmates and friends also exhibited unusual patience and compassion. Particularly, the kids amazed me with their willingness to include her in everything. Her difficulties, her speed or her continued absence didn’t affect them at all. They proved that being inclusive only requires an unconditional willingness to help and be patient. Her teachers were extremely kind and supportive. Their encouragement and motivation lifted her morale and spirit. Her classes gave her the normalcy she had been yearning for during the treatment.

Sreya’s response to her multiple and continuous health issues showed the importance of embracing change and making the most of everything that comes our way. Work hard to change or overcome the hurdles that come. But when that doesn’t happen, adopt a different formula. Adapt! Adapt and pave new paths, find new interests and happiness. Resilience is not necessarily in one’s ability to smile when the adversities come. Rather, it is in one’s ability to rise from the ashes.

Everyone around us started to forget about her health issues because of how she conducted herself through it all. When the symptoms returned, the things changed quickly and steadily. Unfortunately, at this stage there was nothing anyone could do to halt or slow it down. We were helpless spectators to her pains and sufferings. Still, through it all, she didn’t complain. She didn’t spend her days in distress, rather she tried to be content with what she could have - sleepovers, outings to all her favourite restaurants, Among Us sessions with her cousins and cooking with her Dad. She was bedridden for three weeks. All that while, she could neither cry nor smile. Yet, she always answered with a thumbs-up for everything. Finally, on August 25, 2021, after a heart-wrenching and painful journey, she left me – forever.

During those final few months of her life, I rediscovered that the beauty of life is not in the big achievements, but in the small things. The challenges that life poses before us and our attitude towards them make our life remarkable journey. To be able to sleep, eat, walk, talk, laugh and even cry are blessings that we take for granted. Yet, these small things breathe life into us and make it possible for us to experience the beauty of the world.

Sreya will always be my angel, who changed the way I approach my troubles and pains. Her life changed the way I and the many who interacted with her, perceive life. Sreya graciously smiled and fought a difficult battle with dignity. She truly chose to be a Superhero instead of a damsel in distress. She will forever live on in our hearts.

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