The family of a little boy with an extremely rare genetic condition have been sharing their experiences in a bid to help find a cure.
The Trickett family, of Rowlett Road, Corby, attended a conference in Manchester on Saturday to talk about their three-year-old son Owen, who has MECP-2 Duplication.
The condition was only discovered five years ago, and it took the family 16 months to get a diagnosis.
It causes development delay, respiratory problems and a low immune system and is believed to shorten life expectancy. Owen is unable to walk unaided and cannot talk.
Mum Donna, dad Jonathan and grandmother Annie O’Neill met with genetics expert Professor Jill Clayton-Smith, and 11 other families who have children with the condition, at the event in Chorlton.
Only about 120 cases are known worldwide and it was the first time the Tricketts had met anyone else who has a child with the condition.
Mrs O’Neill said: “The meeting went well and we met 10 boys with the same condition, and one girl whose family had travelled up from the Isle of Wight.
“There is research going on into the gene, but we are only a small group so the big thing is to raise awareness. There will be more boys out there and there are more tests being done.
“We are going to meet every year now and hope next year it will be bigger and more medical professionals will be involved.
“We are also looking to set up a UK support group for parents on Facebook.”
The family is still raising money to buy Owen sensory equipment and soft flooring for their garden to allow him to play outside.
A benefit dance has been organised for Friday, February 10, at the KK Club, in Occupation Road, Corby.
Also on the night, Owen’s brother Jez will be doing a charity hairshave.
Tickets cost £5, which includes a hog roast, and are available by calling 01536 500327.
A further fundraising fun day is planned to take place at The Corinthian pub on Easter Monday.
Previous fundraisers have proved very successful with £3,400 raised at a pyjama party at St James’ Snooker Hall and £600 when Corinthian regular Paul Dobie took on an eating challenge with a 48-ounce steak.