Sonam, 15, is 1.3 feet tall. Her brother, Shivam, 10, is 2 feet and sister, Naina, 9, is 2.5. All three are suffer from growth hormone deficiency, a genetic disorder.
“This disorder is normally present in one in 5,000-10,000 people depending on the area. But this case is unique as all the children are of a couple suffering from the lack of growth hormone in the body.
It is a misfortune for the family," said a senior endocrinologist, All India Institute of Medical Sciences, who is treating the children. Sonam finds it difficult to even climb a chair, work on computers or open doors. The other two also face similar difficulties.
The treatment of stunted growth is available in tertiary care hospitals like AIIMS. It takes an injection a day to bring these children to acceptable heights. But the treatment costs Rs 10,000-15,000 a month.
Their parents cannot afford this amount. The father is an unskilled labourer in Haryana, while the mother is a housewife. They have been running from pillar to post to arrange money for their children.
“The Prime Minister's fund has granted Rs 50,000. But that is sufficient only for a month or so. We are appealing to the general public to make donations for them," said the doctor.
Uday Foundation, an NGO has been able to garner Rs 55,000 for them.
Expensive medicine
"The family will need monthly dosage of Rs 15,000 for Sonam for two years and the same amount for her siblings for the next five years. They need a lot of support," said the doctor.
Children suffering from this growth deficiency can never attain normal height if the treatment does not start at the age of four or five. The purpose in such cases then is to bring them to a height where their day-to-day activity is not jeopardised.
"This case was not be diagnosed early even though it takes only a routine blood test and an X-ray to determine lack of growth hormone. Lack of knowledge of the problem is at the root of this," said the doctor.