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Can someone save this 5-year-old boy from Hunter syndrome?

In common language, it can be termed as a lysosomal storage disease caused by a deficient (or absent) enzyme iduronate-2-sulfatase (I2S)

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Shaurya Singh, who is suffering from Hunter syndrome.
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Tugging at the shirt of his father, he insists on having an ice cream. Just like other kids of his age. The very next moment, his eyes light up for the Fanta being served to others, but he can’t have it. Jumping around on and off his sofa, still hanging on to the promise of ice cream and savouries the father has promised. Shaurya Singh’s childlike wishes belie the pain he is going through.

The 5-year-old suffers from a rare genetic disease called Hunter syndrome, which is gradually rendering him immobile. More tragic is that the country’s premier medical institute – the All India Institute of Medical Sciences (AIIMS) – has also given up on any hope of saving the child, and with annual medical expenses running into Rs 1.86 crore, his middle class family doesn’t see any ray of hope.

Shaurya was two-and-a-half-year-old when he was diagnosed with this rare genetic disorder – Hunter Syndrome, mucopolysaccharidosis II (MPS II). In common language, it can be termed as a lysosomal storage disease caused by a deficient (or absent) enzyme iduronate-2-sulfatase (I2S).

“Due to his constant chest infection, the doctor has asked us to put an oxygen mask on him 24X7, which costs around Rs 86,000. We have travelled to Delhi over two dozen times since the detection of this disease in August 2014.  I work at a private firm and my wife is a homemaker. My salary is Rs 40,000 a month and more than half of it goes on travel and his medication,” said Saurabh Singh, his father.

According to Saurabh, “data provided by an NGO showed that 78 children in India are affected by this disease.”

For this surgery also, he has to arrange funds. Richa Singh, the child’s mother is herself battling a wounded toe finger after an accident and since the injury is grave, most likely her finger will have to be cut. Limping in the house, corner to corner, and attending to her six-month-old daughter, Richa has all ears to her son, who is asking her to pamper with momos.

She holds a glass of cold drink just to please his son and divert his mind as she knows he can’t eat that. “The disease make your joints stiff, and, hence, he needs to undergo physiotherapy sessions every day evening, which costs them Rs 200 an hour. To cut down costs and cuddle with her son, she has now mastered the art on her own. He goes to a playschool but we have to be constantly alert as the school can call us anytime due to his condition,” added Richa. The spirit and hope of the family to save their child can put anyone into shape.

“He doesn’t know what is the problem or if he has a disease. Every time we go to the hospital, we tell him that sui (injection) will be put to us but in the end he cries as he knows he will get it,” adds Saurabh.

Saurabh has left no stone unturned, no door unknocked to raise funds for his child -- from Members of Parliament to the Chief Minister of his state (Jharkhand) to the Prime Minister and the President, he has written letters and made personal visits. Apart from this, he has tagged celebrities and sports stars on social media platform.    

The couple thought something was amiss when Shaurya was two-and-a-half-year-old and had a bigger head than a normal child. The top hospitals in Ranchi, where the family hails from, and all the famous hospitals in Jharkhand, including Tata hospitals, could not detect the disease despite being well equipped. “Someone informed me about CMC Vellore, and, in March 2014, I went there and they carried out tests and detected it. The test results in the country take time to come and I missed getting charitable treatment for him. Shire, the pharmaceutical company which makes the medicine had, in 2014, started a charitable programme under which they supplied medicines to a child for free, but by the time the diagnosis and tests results came, the programme was over. “I want to save my child. Even if my entire family sells all assets, we can’t even make Rs 50 lakh, forget a crore. People donate so much to charitable organisations, if someone could just save my son,” hopes Saurabh.

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