Brave Pavan defies all the odds
A SOLIHULL child has been diagnosed as one of only 27 people in the world with a rare and incurable metabolic disorder.
Pavan Tailor, aged ten, from Shirley, is suffering from multiple sulfatase deficiency.
Like most toddlers he was walking and talking by the age of two, but a week after his second birthday he was unable to speak or move.
Waste matter builds up in his cells, preventing them from functioning, which can affect the brain, skeleton, hearing, liver and spleen.
The condition is one of 40 progressive diseases, known as lysosomal storage disorders, caused by faults in enzymes.
Until now young patients with an LSD had to travel to Cambridge, London or Manchester for their weekly four-hour sessions of enzyme replacement therapy.
But last month Birmingham Children's Hospital was granted a special prescribing licence by NHS agency the National Commissioning Group to treat patients with drugs costing between £50,000 and £500,000 a year, much closer to home.
Although Pavan will not benefit from this latest development, his progress continues to amaze the hospital's specialist staff, and he is flourishing at Reynolds Cross School, in Olton, where academic lessons are replaced with sensory sessions, physiotherapy and music.
When Pavan was first diagnosed his mother Nita Tailor had no idea where to turn.
"It was like he lost his speech overnight, everything happened so quickly," she said.
"It was a very lonely time because, as he was the only person in the West Midlands with MSD at the time, there was no-one we could talk to or who could relate to what we were going through. But eventually we learned to recognise the different cries for attention, food or pain.
"A smile is the best we can hope to see, but when we do it's a mini miracle."
As well as being unable to move or communicate, Pavan cannot swallow properly so all his meals have to be pureed and fed to him.
Mrs Tailor and her husband Sailesh, an IT worker for Severn Trent, first took their youngest son to Heartlands Hospital in January 1999, when he became seriously ill after contracting a virus.
Pavan's health worsened and, following two months of tests to establish what was wrong, he was diagnosed with MSD. Last year a further two more young patients were diagnosed with MSD in the region, making it the largest group of known cases in the world.
Pavan has to take painkillers daily, because his joints are stiff and his hips are dislocated, and also has regular check-ups at the Inherited Metabolic Disorders Unit at the Children's Hospital.
Dr Anupam ChakrapaniCT, who heads up the unit, said: "Unfortunately there's no available cure for his condition, and in most cases children with MSD have a maximum life expectancy of five years but he's now ten."
