PARENTS of a boy with a rare genetic disorder are calling for greater understanding of the struggles faced by affected children and their families.

Six-year-old Brynley Walkinshaw is one of just 62 youngsters around the world to be diagnosed with the disorder, which is so rare it does not even have a name.

Known as 1q21.1 Microdeletion, the condition causes learning, behaviour and mental health problems, as well as physical abnormalities.

Brynley's parents, Clare and Steve, from Addingham, are calling for awareness of the condition.

And they talked about their own experience during the charity Unique's Rare Chromosome Disorder Awareness Week.

Clare said Brynley, who was diagnosed with the disorder in February 2014, was born with a number of problems, including a congenital heart defect and Syndactly (joined digits of the feet). He had 'blue episodes' at birth and failure to thrive.

She said: "We didn't know what effect the blue episodes had on his brain due to lack of oxygen, but were told we would know as he grew older.

"At 18 months, we noticed he wasn't speaking much or developing the same as other children his age. We contacted speech and language, who put us in touch with a paediatrician. She did one simple blood test and it confirmed everything and answered a lot of questions as to what happened when he was born.

"He struggles mostly with his understanding, communication, development and fine motor skills. He is not up to speed with the rest of his peers but he does try and attends mainstream school, where he has one-to-one support.

"He is a normal little boy to look at but everyday has something different to show us. That is the complexity of his disorder – we don't know what will happen next."

Clare added: "Unique is our lifeline and a valuable source of help and information on something our little boy has to live with for his whole life.

"It is who we turn to when no other professional knows much about 1q21.1 Microdeletion.

"I want to raise awareness so that no parent has to be afraid of the unknown, as we were.

"Unique has a Facebook page for parents, which we joined, and it was helpful to be in touch with others who had been through the same experience as us, and to chat with them as we came to terms with his diagnosis and were dealing with the implications for us all. Unique can also put you in touch with other families, who are local to you, who have children with the same or similar disorders."

Simple daily activities many of us take for granted, like doing the weekly shop or going to the park, can become hugely difficult, particularly when Brynley’s behaviour is misunderstood by others. By raising awareness, Clare and Steven hope to increase public understanding and acceptance.

A spokesman for Unique said: "Unique is a small charity, the only one in the UK providing information and support for families with children who have a huge range of rare chromosome disorders.

"As new technology makes it much easier to diagnose the smallest of changes in a person’s genetic make-up, demand for Unique’s services has increased dramatically in the past two to three years. Often the disorders are so rare that doctors and other professionals have little knowledge about them and are unable to tell parents what the future will hold. Parents can be left feeling isolated and lost, with lots of unanswered questions. This is where Unique comes in, with specialist information and a caring, understanding approach."