A STOURBRIDGE charity has celebrated the setting up of an All Party Parliamentary Group which aims to raise awareness of a rare genetic condition.

Jack Lopresti MP chaired the first meeting of the new group for registered charity Max Appeal - which was set up 15 years ago by Wollaston couple Paul and Julie Wootton after the death of their baby son Max, who died of complications resulting from 22q11 syndrome.

Mr Lopresti set up the group to raise awareness after meeting a constituent whose daughter has the complex condition which often leads to lifelong struggles for those affected by the many health problems associated with it including heart defects, speech and language difficulties, muscular and spinal problems, mental health problems and faulty immune systems.

He said: "I set up this APPG to raise awareness about this syndrome now that it can be tested for. The 22q11 syndrome is estimated to effect up to 35,000 people in the UK. The detection rate is currently very low which means people may not be getting the help they need. I am pleased so many of my colleagues have joined this APPG.”

Julie Wootton, chairman of trustees for Max Appeal, said: "We are incredibly grateful to Jack Lopresti MP and the MPs putting their weight behind it. We hope this will help to raise awareness and understanding of the needs of families, their children and adults living with the condition.”

Stourbridge Margot James MP - a long-term supporter of Max Appeal - is vice chairman of the group, which held its first meeting on December 2 in Bristol.

The inaugural gathering saw parents giving their personal experiences of living with a child or young adult with 22q11 - the complexity of which often leads to clinical confusion and a delay in diagnosis by years.

Dr Alex Habel, retired Great Ormond Street Hospital paediatrician, also discussed how new genetic technology is helping to identify those with the syndrome.

He said: "It is the key to improving these individual’s lives by early and anticipatory delivery of care. From conception onwards it affects many body systems, including the heart, palate, immune system, behaviours and mental health. Care is therefore best provided by a multidisciplinary team throughout the life cycle.

"Education about early recognition of 22q11 syndrome should extend to all professional disciplines who specialise in delivery of health and psychological services, and education, to children."