Jamiroquai: Virtual InsanityiTunesAmazon

Jamiroquai: Virtual InsanityiTunesAmazon

VIDEO: Ilkley mum highlights son's rare chromosome disorder

VIDEO: Ilkley mum highlights son's rare chromosome disorder

Published at 7:18am 15th June 2016. (Updated at 1:30pm 15th June 2016)

An Ilkley mum is calling for better understanding of her son's condition.

Clare Walkinshaw's son, Brynley, has a disorder so rare that it doesn't even have a name.

1q21.1 microdeletion causes learning, behavioural and mental health problems, as well as physical abnormalities.

Clare was told that Brynley was only the 62nd child to be diagnosed with the condition worldwide.

She told Stray FM: "To look at him, he is a normal-looking little boy on the outside, all his struggles with learning and development are on the inside."

Clare and her husband, Steven, now want to raise awareness of the challenges faced by those living with these disorders and their families.

She's supporting the charity Unique's Rare Chromosome Disorder Awareness Week, which runs from 12 to 18 June.

Clare said: "If a parent has any doubt in their mind about whether their child has any problems or they think they are delayed or their speech isn't where it should be by a certain age, they should go to their paediatrician and question it and hopefully they will get answers like we did."


Having been told by doctors that they knew little about Brynley's rare chromosome disorder and didn't know what the future held for him, the charity Unique put the family in touch with others facing similar challenges, and Clare was able to make contact with other families.

She added: "Unique gave us information and put us in contact with people who had children or who themselves had a chromosome disorder and it's been invaluable, because they have been able to tell us things that we can relate to with Brynley."

As new technology makes it easier to diagnose the smallest of changes in a person's genetic make-up, demand for Unique's services has increased dramatically in the last 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.

More information at www.rarechromo.co.uk