British-Indian boy with cerebral palsy travels to US for revolutionary treatment

London: A seven-year-old Indian-origin boy who suffers from cerebral palsy left with his family for the US on Sunday for a revolutionary treatment that has the potential to improve the quality of his life and give hope to others with neurological disorders.

Jay Shetty suffers from a debilitating form of cerebral palsy and autism since he was a baby, which means he cannot walk, talk or sit up unaided.

He is now set to undergo a pioneering clinical trial at Duke University Medical Centre in North Carolina, which relies on the infusion of his younger brother’s umbilical cord blood frozen at birth.

“After a lot of research on stem cells, we had decided before I got pregnant with Kairav, our younger son, that we would save our child’s cord blood. Then towards the end of the pregnancy in 2015, I got in touch with Duke University and they were planning on doing a sibling cord blood therapy trial,” said Jay’s mother Shilpa.

She and husband Raj had the umbilical cord blood of their younger child frozen and stored by UK-based blood bank Cells4Life.

Umbilical cord blood is rich in a kind of stem cell that can, in theory, help heal most parts of the body, either by stimulating growth or by transforming into the required type of mature cell.

These can then be put back into the body, even many years later. It relies on a close tissue match for the recipient, to lower the odds of the body rejecting it.

When the Shettys contacted Duke University, they were told that Kairav’s blood was a match for Jay’s - raising the prospect of the UK’s first such sibling cord blood therapy on Jay.

“Stem cell is a cure for some and improvement for all, so we are pretty sure it will definitely have some improvement in Jay’s life,” said Shilpa.

The family from Maharashtra, who have been based in London for over 15 years, are determined not to be put off by some dissenting voices within the medical community who cast doubts on the rare procedure.

According to Shilpa, because it is not an “invasive therapy”, they want to go into it with a positive “nothing to lose” attitude.

“It is in its early stages and it has always been the norm that people will doubt treatments which have not been proved yet. But stem cells in general after years of proven research are known to have the ability to reach the damaged organ and regenerate new cells,” she said.

Claudia Rees, Operations Director at Cells4Life, describes the procedure as a “cutting-edge treatment”, considered a cornerstone of a relatively new area of science known as regenerative medicine.

“Stem cells and cord blood have already been used to cure diseases such as leukaemia, lymphoma and testicular cancer; in the near future it is likely that these treatments will provide hope for common and often life-threatening conditions such as heart disease, Alzheimer’s and diabetes,” said Rees.

Cells4Life believes the results of Jay’s procedure will be “very exciting”, made possible by parents choosing to bank their children’s cord blood at birth at an estimated cost of around 2,000 pounds.

Jay will be in the US for the treatment for a week and undergo rehabilitation in the UK after the cord blood transfusion procedure. The family have managed to raise nearly 26,000 pounds through fund-raising to assist with the massive costs involved.

“Jay cannot express and communicate much but we are pretty sure he knows what’s going on as he is pretty bright. Kairav is two and half, so doesn’t know much. But he knows a lot of travelling revolves around Jay for therapies. So, he is used to it,” said their mother, who believes even a small improvement in Jay’s quality of life as a result of the therapy would be a success story for their family.