Arian's story

Arian was born on 24th February 2002. In 2004, one of his school teachers said Arian had difficulty putting his own bag on his back. Every child puts their bag on their back but Arian could not.

When Arian was around three years old he started having health problems. He was constantly having colds and ear infections. He had finger stiffness. We took him to see a doctor who recommended physiotherapy. At the check-up the doctor heard a wheezing sound in his heart. An echocardiograph showed a thickened mitral valve. We were worried but were assured that it would not pose a risk at this stage and it could be operated on when Arian was older.

Arian was referred to another doctor who suspected something more complex. He ordered a full skeletal X-ray and later explained that Arian was suffering from a rare genetic disease called MPS. He needed more tests to know what type of MPS he had. The doctor told us we should start preparing ourselves for the fact that Arian would not be with us for much longer. Maybe only another three to four years. ‘Let him go’ the doctor told me. But how do you do that as a parent? You just can’t.

Many of the doctors in our locality have no knowledge of MPS diseases or LSD diseases. They do not have time. They say, ‘tell me more about MPS’. Finding doctors who know about a rare disease is as difficult as living with the disease itself. I pressed my doctors and gave them information about Arian so that other parents would not have to.

Arian is my only child and there were no other parents with whom I could share my pain. There are so many problems with Hunter’s syndrome. The whole body is affected. Hearing problems, a runny nose, everything. People stared as though he was an animal in the zoo. Wherever I went, people looked. Being a child he was not aware of this but that too was painful for me.

I joined the LSDSS (Lysosomal storage disorders support society of India) and saw that there are other children whose parents were also experiencing the same things. That helped me. The society is a source of strength and a good network for us. I have become one of the executives. My wife and I take Arian to hospital every week and it has become a routine outing for us. It’s a happy day for us. I live for happy Fridays.

Arian loves to play drums. Sometimes he drums on the table or a plastic chair or he’ll play music with sticks, or with combs. On Facebook and Twitter everybody, irrespective of political views, of religion, wherever they are from, they help Arian. We are so supported by many, many people.