1. ITV Report

Sunderland boy becomes first person in medical trial

Four-year-old Jack Baird will be part of a new study into a rare genetic illness Photo: The MPS Society

A boy from Sunderland is to become one of the first people ever to take part in a new study of Mucopolysaccharidosis (MPS) III.

Four-year-old Jack Baird has the condition, which is also known as Sanfilippo Disease.

It is a progressive, genetic and life-threatening disease which affects around one in 85,000 people in the UK.

Currently there is no effective treatment for people diagnosed with MPS Credit: The MPS Society

There is currently no effective treatment for the illness which is diagnosed in childhood.

Those with the condition experiencing deafness, hyperactivity and behavioural problems, progressive developmental delay, and seizures during the later stages of the condition.

The condition is usually fatal in late childhood or early adulthood.

Jack's parents hope the treatment will give them more time to make more memories with their son Credit: The MPS Society

Researchers at The Royal Manchester Children’s Hospital and The University of Manchester have recruited Jack as the first child in their new study.

The study aims to evaluate the clinical effectiveness of a treatment developed in Manchester, which could alter the lives of patients with Sanfilippo Disease.

“Jack’s condition means that he doesn’t speak much, is very hyperactive and has to be sedated to go to sleep. Jack isn’t very interested in toys, but he loves going to school, and out elsewhere. He enjoys going on the bus and going to Asda where everybody knows him.

“We found out about the clinical trial through The MPS Society, which was working with Dr Jones at The Royal Manchester Children’s Hospital. We got involved initially in 2012, by helping to fundraise for the study. We know that the treatment is not going to save Jack, but if the drug works we will have more time to make more memories, and memories are priceless.”

– Gemma Nelson, Jack’s mum.