This support group is a brave attempt by two brothers who have been afflicted with Ataxia Guruprasad and Vivek Rao, residents of Pune, sons of bravehearts Rukmini Devi and K H Rao.
Ataxia is of two major types – genetic and sporadic. Read more about it here.
These two young men have a sporadic form of Ataxia – a fact that was established after it was ascertained that no one in five generations of the family on either side ever suffered from this condition.
Vivek, the younger of the two displayed the symptoms as a 4 year old. He had difficulty running and something didn’t seem normal about him, especially when compared to his older brother.
After visiting many doctors, RS Wadia, a leading Neurologist of Pune diagnosed the condition as Ataxia.
He warned the parents that the condition has no known cure and that it would progressively degenerate the muscles in his body, making him physically immobile and dependent on his parents.
The parents were heartbroken. Their only consolation was that in the event of their demise, their older son Guru will look after his brother. He is a Commerce graduate and was employed with a MNC in Europe, making the Raos believe that Vivek’s catastrophic condition will receive support from his able older brother.
The appearance of the condition in Vivek was only just manifesting itself as a full blown disease in his teens when his older brother was also diagnosed with the same condition.
Guru was relieved from his job and asked to return to India.
36 year old Guru and 30 year old Vivek are totally confined to their homes.
But physical immobility has not robbed them of a drive and steely determination to formally begin the first Ataxia support group in Pune.