Muscular Dystrophy - Rao Family

Please help Aditya, Shruti and their mother, our friend Mirla. She is the sole care-giver, provider and parent to these two wheelchair bound adults. Both Aditya, aged 27 and Shruti aged 28, started life fit and healthy. Aged 12 and 13, they were cruelly struck down one after the other in rapid succession, with progressive muscle deterioration.In a very short span of time, both became wheelchair-bound and fully dependent on their parents for all basic functions.

Mirla and her husband Ananth ran from pillar to post, they travelled the length and breadth of India, seeking help from all the specialist doctors and hospitals their modest circumstances could afford. They prayed in temples, mosques and churches. They followed every lead suggested and left no stone unturned. But it was to no avail- the diagnosis was a rare form of muscular dystrophy. Ananth took voluntary redundancy from his job at an insurance company and in between trying to seek help for the children he tried to set up as an independent insurance broker. Mirla tutored neighbourhood children and started a home cooked meals service to make ends meet. She kept house, cooked, cleaned, hauled the children in and out of their wheelchairs.

Ananth's health started suffering. As the family reeled desperately from blow after blow, the children’s education became a casualty of the chaos that ensued. Shruti only studied until class 11 and Aditya until class 8. Mirla still didn’t give up. She scraped together the money to buy a laptop and with her encouragement they upskilled themselves and learned the basics of data entry . She found a job to help with the financial burden and tried to reassure Ananth who was juggling business commitments with devoting himself to the rapidly declining children. On days when both parents had to be out for work, they remained stranded, helpless even to serve a meal and unable to carry out basic functions. Along with the isolation and loss of dignity they suffered grave physical ill-effects as a consequence.

In 2015, after long years of struggle, Mirla managed to secure jobs for her children as well.Finally, it looked like they could make a decent life for themselves, but it was not to be.

In May 2015, Ananth passed away suddenly on the day after his 53rd birthday. Mirla was left alone. A kindly Christian pastor helped the family pray and work through the grief of losing their beloved father and husband.

And they continued to survive in this manner, one day at a time, until recently when Coronavirus struck another blow. With businesses indefinitely shut down, Mirla and Shruti lost their jobs. The struggle hasn’t ended, neither financial nor health related. The muscles continue to weaken. They are propped up on their wheelchairs and if not adjusted carefully to balance, the waist is not strong enough to hold up and they are likely to topple. They cannot move their legs, only make limited movements to adjust their position. Arms resting securely on the laptop they can move their fingers to type. Wheeled up to the dining table, if their arms are placed on the tabletop, they can raise bread to their mouths and manage rice with a spoon. If the glass of water placed on the tabletop is not too heavy, they can lean down and tip it forward to drink. They help their mother wherever possible-peeling boiled eggs or potatoes with the bowl placed on their laps and can cut soft vegetables like beans. Leaning on the washbasin, they can brush their teeth and use a flannel to clean their faces. They need help to use the bathroom and to be wheeled into the shower in a special wheelchair. They need help to change their clothes. The muscular deterioration is progressive.

Mirla has a special belt to support her back for all this. At night she has to slide them on to the bed, adjust them into a comfortable position and help to pull the sheets on or off if they are hot. She also needs to turn them over when needed throughout the night.

Over the years, Mirla has never complained and has never asked for anything.

When we speak now, the worry lines are etched deeper on her forehead, her shoulders slump forward in exhaustion, her face is drawn and pale, her eyes are dull and tired. She has endured the intolerable for so long and cannot carry on like this. We need to do something. We need to help this family.

We (Mirla’s school friends) have set a target to raise £ 50000 in the first phase, so they have the security of a decent meal on the table, money for rent and ever-increasing medical expenses. They urgently need a motorised wheelchair and hoists. Adaptations are needed around the home to make life a little easier. They need to buy a car fitted with a ramp for the wheelchairs. Funds for physiotherapy to relieve stiff and aching muscles and to preserve fading movements and to keep them going as long as possible. To find a helper to provide some respite to Mirla for a few hours each day. To afford the quality healthcare and attention that they require.

Please donate generously, please help us restore some security and dignity to Aditya, Shruti and Mirla. Together we can change their lives.

Thank you,

Rima

Jayashree

Pavani

Manju

Nimmi

Shanthi