Suman Ghosh with his mother, well on the road to recovery. Picture by Bishwarup Dutta

Suman Ghosh, 11, woke up on June 6 and found that he could not move his limbs. Soon, the other parts of his body started cramping up and he began to have difficulty breathing. What followed was a two-month ordeal, with injections and ventilators. Suman returned home from hospital on August 6, on the road to full recovery from a sudden paralysis of nerves, known as Guillaine-Barre Syndrome (GBS).

The disease can strike anyone anytime. There is generally fever, followed by a lull for a couple of days, before the nerves begin to stiffen and atrophy. The organs, too, waste away because of nerve damage, according to Debasish Chowdhury, a consultant neurologist at National Neurosciences Centre (NNC) of Peerless Hospital.

The head of neurology at NNC, Tapas Banerjee, said: “The disease is extremely rare. There is about one-in-a-million chance of a person being struck by it.” The disease strikes in winter more than in the other seasons, he added.

“GBS is a demyelinating disease, in which the myelin sheath on the nerves gets removed. There is no age-group that is particularly vulnerable to GBS. I have treated patients from four to 80,” said Chowdhury. “Once respiratory complications set in, the patient has to be put on a ventilator. The trouble is that there are few ventilators in government hospitals, though there are many in private hospitals. In any case, it is difficult for most people to pay between Rs 10,000 and Rs 12,000 daily just for the ventilator.”

Suman was on the ventilator for 45 days. He was also administered a dose of human-immuno globulin injection, costing Rs 50,000. The total bill came to Rs 5 lakh. His father, a contractor, had to take a loan for Suman’s treatment.

The Class V student of Naba Jivan Vidyamandir was a regular swimmer. The Adam Gilchrist fan often sneaked out from the family’s Birati home to play cricket in the locality. “He was always very active. I can’t remember the last time he fell sick before the terrible disease struck,” said his mother.

Chowdhury claimed the family wasted valuable time in seeking a second opinion after he told them that Suman was suffering from an axonal variant of GBS. The boy was admitted at NNC and put on a ventilator on June 8. He had to undergo tracheotomy — a surgical incision of the trachea through the neck to make an artificial opening for breathing. Suman still finds it difficult to move his wrists and feet.

The boy can take heart from the case of Ishita Khan, who is the captain of Green House at St Thomas Church School, Howrah. She was only 12 when she was diagnosed with GBS and had to be on ventilator for three months. A year of physiotherapy followed.

Six years on, Ishita is fully cured. “I remember how helpless I used to feel when I was on the ventilator. It seems like a nightmare now. But it’s over and I have to make it big in life, if only to thank my parents and all those who had made contributions towards the medical expenses, which added up to more than Rs 7 lakh,” the girl told Metro.