Ailing children await helping hands

“Two years ago, my children Sachin and Supriya were normal like any other children. Unfortunately today, they sit in one place, fully dependent on me to move from one position to another,” says their distressed mother Saroja Shivapujimath.

The reason: both of her children are suffering from a rare muscular disease called ‘muscular dystrophy’ (MD). A thin glimmer of hope for the siblings lies in very expensive treatment available in Mumbai.

Sachin (14) and his sister Supriya (17) are victims of MD, a hereditary disease that has weakened their muscles. Their hands and legs remain limp. They can neither walk, run, nor move from place to place.They have to wait for their mother even to change their sitting posture. However, the disease has not crippled their mental faculties. They can speak and express their feelings.

Doctors have told Saroja Shivapujimath that there is no medicine for this rare disease which might appear in one person in a thousand. “We have consulted neurologists at Belgaum, Shimoga, Bijapur, Gadag and Dharwad and Nimhans in Bangalore. The only treatment the doctors gave was physiotherapy,” she said. Genetic factors cause MD in children. The condition is inherited, and the different muscular dystrophies follow various inheritance patterns.

Saroja is married to a close relative and this in itself is a major reason for the prevalence of MD in children. She says the disease first attacked her children’s legs. Supriya and Sachin found it difficult to walk, and complained of pain in the legs. Within a few days, the disease spread to both the hands.

“At first we consulted a physician in Dharwad who referred us to neurologists in Nimhans,  Bangalore. Here Sachin and Supriya were kept under medication for few weeks. The doctors then concluded that this disease does not have any medical treatment and the children could get relief only through physiotherapy,” Saroja states.

Her husband Varasiddhayya Hiremath, a small farmer, has spent over Rs seven lakh on the treatment of his children. Now the couple is unable to bear even the physiotherapy expenses. This has forced both the children to sit in a room at their home.

A television show in which doctors indicated that stem cell treatment available in Mumbai could cure this condition has rekindled hope in the Hiremath couple. However, the high cost of the treatment - close to Rs six lakh - puts it beyond the reach of the poor people.

“We  have already taken loans on our land for children’s treatment. Hence we cannot afford for this treatment,” Saroja says with tears in her eyes. The family is looking forward for help from generous donors who could give the ailing children a fresh lease of life. Individuals, trusts and NGOs wishing to offer help can contact Saroja Shivapujimath, Goudar Colony, Haliyal Road, Dharwad, or dial 98864 55906.