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Story #5 of 50 days, 50 Stories Campaign
Kshitiz and Shikha Kharia, 51 and 45, Parents, Muscat, Oman
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Ashi’s Dream
“Her name was Ashi. It means ‘Smile”
Mr.Kshitiz and his wife, Mrs.Shikha, had a beautiful daughter. Her name was Ashi, which means “smile.” When Ashi was three-and-a-half, the child was diagnosed with Acute Lymphoblastic Leukaemia (ALL). “We were not aware what the symptoms are, and by the time we got to know about our daughter’s disease, it had already spread to 98%,” says Shikha. Many hospitals turned them down, refusing them care because they felt that the little girl was a lost cause. Only one hospital in Mumbai agreed to take her on, and for the next few years, that would be the world Ashi would see.
The doctors at the hospital were optimistic that chemotherapy would manage the illness well. Chemotherapy injections are difficult for small children to take, and inferior tiny Ashi’s veins were prone to bursting. The doctors surgically implanted ports on her head and chest to facilitate the sessions. It was all too much for the child. “She was so angry with us for bringing her to the hospital instead of a party or dressing her up like a doll. What would a small girl like her understand? She would refuse to talk to us for two-three days. we were helpless, and we didn’t know how to deal with that.” After 12 sessions of chemo, Ashi recovered for a while but then relapsed again. Doctors began to consider a bone marrow transplant. This would be the first time the couple heard about it.
Kshitiz and Shikha tied up with DATRI Blood Stem Cell Donors Registry and promptly began the anxious search for a Bone Marrow Donor. “We tried everything. We conducted drives at around five different places in Gurgaon, Bhilai, Raipur and got around 200 people to register as Potential Blood Stem Cell Donors. We printed flyers and distributed them every day. I would show videos of the process, and really, we tried very hard.”
The drives were not very successful. Around three matches were found, but all of them backed out. “At that time, people were terrified because they thought Bone Marrow Donation was harmful, and some were not ready even to come and register–even people from my family,” recalls Shikha. But there is no trace of bitterness in her voice. “It’s not their fault. It was just the unawareness. People turned up for the drives, and some still thought it was a blood donation. There were people still asking questions like ‘How do we register? Even we want to be part of such a noble cause.’ The thing is, there are, and there were many people who want to do it. The only problem is the ignorance.”
Despite the lukewarm and unhopeful response, there was many a silver lining on Ashi’s cloud. “My little girl was around while we were conducting the drives. She was ever-smiling and won everyone’s heart. So when people connected with her, they were not concerned with the how anymore. They just wanted to help.” There was an outpouring of moral support. “We even had a webpage, called ‘Help save Ashi’ which our friends would help us keep track of because we were always at the hospital with our child. They would keep putting up details about how she was doing, what medicines she was taking, and all that. People we didn’t know at all would be doing pujas for her well-being. She was such a blessed soul.”
Ashi was a princess among children and the joy and loved by everyone around her. She displayed a maturity, intelligence, and zest for life that was far beyond her years. “She was the youngest in the Oncological ward at the hospital, and other patients were older, depressed, and not the best company for the child. But she would cheer them up. She would tell them, ‘If I can walk and eat tablets, why can’t you? You also eat, and you’ll be strong.’ She would make cards for all the doctors at the hospital, and she would only let them give her injections after they played with her in her dollhouse. They pampered my daughter a lot,” says Shikha, in tears.
Ashi’s dream was to grow up and become a doctor. She wanted to start a hospital for children called “Ashi Will Save Your Life.” Since children with cancer are not allowed to go to malls, playgrounds, and places where they can contract infections easily, Ashi’s hospital would have all these things inside the hospital to not miss anything. The budding doctor knew she would have to study hard. “She would pack her bag and send it to school with our driver on days she couldn’t attend. The teacher would send it back with all the homework for the day. When people saw her studying in the ICU, everybody thought I was placing so much pressure on her… it wasn’t me!
This was all her. When I’d tell her to take it easy, she would say, ‘Aap chahte hain ki main out ho jaun? You want me to fail? Main out nahi hone wali hun. I’m not going to be ‘out’!”
At long last, they found a donor who was ready to give. But he was Caucasian, of a different gene pool, and the chances of Graft versus Host Disease (GvHD) were higher. “By the time the transplant happened, she had been through 22 chemotherapies, which is much torture for a child. It had made her weak.” With the odds thus stacked against her, the child, unfortunately, succumbed to GvHD. She was about to be six in a week. “I must say, she was firm, she was very bold, and she was our life. She was our cause.”
Kshitiz and Shikha’s Story reminds us that cancer doesn’t just affect the individual. It wrecks the entire family and all the loved ones involved. “The family has to go through so much not only financially but also emotionally. You can’t cry in front of your child. She looks to you with trust. When you say ‘Everything will be fine,’ the child is convinced that it will indeed be fine. But deep down inside, you’re so afraid and struggling to remain hopeful. It’s been eight years since Ashi left us, but not a day or a function goes by that we don’t think of her. People say, ‘She’s gone, but somebody can take her place’ As a mother, I cannot forget her. Nobody can take her place.”
Nine years after Ashi’s death, Kshitiz got a call from DATRI that he was a match for a fourteen-year-old child with thalassemia (precisely nine years older than Ashi was when she passed away). Knowing grief so intimately, he said, of course. The child he helped is now doing well.
Shikha has an important message for prospective donors: “You’re saving someone, and you’re going to spend a day in the hospital. It’s your superpower. You alone are the chosen ones, and nobody else can do it. No matter how much they wanted to donate, my son and his friends couldn’t because they were below 18, and many elderly ladies: my mother-in-law and her friends wanted to as well, but they were above the age limit. It’s not in our hands whether the child’s body will accept the cells or not. It’s all in the child’s luck. But it is a gesture we (donors) can make.”
Today, the family–Ashi’s father, mother, and her brother (who is now a doctor) live carrying in their hearts a little ball of sunshine that touched their lives so briefly and Ashi’s dream.
You, too, can save a life by registering with DATRI, but please make sure you don’t back out if you are the only potential match for the patient. If there were no back-out, then Ashi would have been with us now.
Act Now and Register with DATRI.
DATRI is a Not-for-Profit organization that was founded in 2009 with a mission to save lives of those suffering from life-threatening fatal blood disorders like Blood Cancer, Thalassemia, Leukaemia, Aplastic Anaemia, Sickle Cell Anaemia, etc
DATRI is registered with the Government of India as a Section 8 organization, and all monetary contributions towards DATRI are subject to 80G exemptions
ACT NOW. GIFT A LIFE
