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Saturday, July 04, 2020

Children with progeria hold out messages of hope in lockdown

'Everything will get back to normal soon, so do not lose hope. Together we will all fight.'

Written by Prerna Mittra | New Delhi | Updated: June 28, 2020 2:43:54 pm
children living with progeria, lockdown experiences, messages of hope from children living with progeria, parenting, indian express, indian express news Nine-year-old Aditya Sahu has been spending his time doing some artwork, and creating beautiful objects with the help of waste materials.

Almost three months in lockdown and now in phase 1 of unlock, most people, especially parents, have left no stone unturned to ensure their kids stay safe, and aware about the basic hygiene rules. They have even been signing petitions to ensure schools continue to stay shut until a cure for the virus has been found. But, admittedly, it is in these times that we gravitate towards positive experiences. In the pandemic, some children who are living with progeria – which is a rare, progressive genetic disorder that causes children to age rapidly – are sending other children, and their parents, messages of hope, while also enlightening them about essential precautions that they can take at home.

Nine-year-old Aditya Sahu is one of them. In lockdown, he has been spending his time doing some artwork, and creating beautiful objects with the help of waste materials. Aditya, who lives in Rewari in Chhattisgarh, is keeping his spirits up, despite the many challenges. For starters, he cannot go anywhere. “We had planned to visit the Mahalaxmi Temple in Kolhapur this year, but considering the pandemic we had to postpone the plan. Also, we were looking forward to going to Boston, through the Progeria Research Foundation, but even that got postponed,” shares Uttam Sahu, Aditya’s father. He adds, “Aditya has a very active personality, and before the lockdown, when he used to return from the school, he would visit the market to get some household stuff with his mother, and then go for a walk in the garden and meet his friends every day.”

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But, instead of letting the situation bog him down, Aditya, who wishes to be a pilot when he grows up, now wants to tell others that this is the time for them to do some yoga and boost their immunity.

children living with progeria, lockdown experiences, messages of hope from children living with progeria, parenting, indian express, indian express news Ahaan Maheshwari wishes he could go out and play like he used to, before the lockdown.

Just like Aditya, little Ahaan Maheshwari (7) from Jaipur, too, has a message. He wants people to stay home as much as possible, and stay safe. Ahaan, who is spending his time in lockdown managing both studies and play-time, wishes he could just go to school and play like he used to, before the pandemic.

Fourteen-year-old Shreyash Barmate from Jabalpur, Madhya Pradesh, too, enjoyed doing regular things before the lockdown, like going to school, attending his singing class, spending time with friends, and studying. But now, he spends his time singing and playing the synthesizer which he enjoys the most.

“Being at home is a major challenge for me, as there are no extra-curricular activities and there is no going to school; everything has come to a halt,” he told indianexpress.com. “But, I only want people to know that only staying home can keep them safe. They must drink warm water, and if at all they have to travel somewhere, they must wear masks, use the sanitizer, and keep a safe distance from others.” 

children living with progeria, lockdown experiences, messages of hope from children living with progeria, parenting, indian express, indian express news ‘Being at home is a major challenge for me, as there are no extra-curricular activities and there is no going to school,’ says Shreyash Barmate from Jabalpur.

Shreyash says he wants to be a singer when he grows up, just like Arijit Singh, whom he follows closely. 

In Nagaland, eight-year-old Prachi Kumari has dreams to become a professional choreographer, as she loves to dance. While before the lockdown, she would play with her friends, and do other such outdoor activities, her family rues that things have come to a halt. “She is not able to go out anywhere and being at home is a difficult task. Also, she has no exposure to fresh air, which is a major concern,” says her father Bikash Sah. 

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The challenges

For the parents of these children living with progeria, challenges are aplenty. In Prachi’s case, for instance, basic survival has become the biggest question. “It is really a crucial time, wherein we are not able to earn or start our work. In the pandemic, survival is difficult. We have to take care of our kids’ daily necessities. But, we are afraid to step out because our child is living with a rare genetic disorder, and her immune system is low,” her father says. 

children living with progeria, lockdown experiences, messages of hope from children living with progeria, parenting, indian express, indian express news ‘Prachi is not able to go out and being at home is a difficult task. Also, she has no exposure to fresh air, which is a major concern,’ says her father Bikash Sah.

Aditya’s father Uttam Sahu says that because of progeria, Aditya has got many other problems like immunity imbalances, high blood pressure, thyroid etc. “As parents, we sometimes feel we don’t give our 100 per cent to our kids, in terms of spending time with them, or being there for them when they need us; talking to them about their plans. So somewhere, this lockdown has helped, because in the period of four months, I have been able to do all these things, which I was not doing earlier because of the busy schedule,” he says. 

But, Shreyash’s father Arvind Barmate is optimistic. He wants to tell other parents to not worry, and to try to be positive. “Everything will get back to normal soon, so do not lose hope. Together we will all fight and take care of our families. We always encourage our child to do whatever he wants, whether it is related to his studies or his singing. And we will continue to guide him to achieve his dreams,” he says.

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