A Godmanchester couple are asking people to embrace the colour orange this week in a show of support for their son who has a rare condition.
Cheryl and Ant Houghton, of Basecraft Way, are trying to raise more awareness about CLN3 Juvenile Battens Disease as Tuesday (June 9) is international Battens Awareness Day.
Harry Houghton, who is now aged seven, was diagnosed with CLN3 in December 2019 and lost his sight at the age of five, which is one of the first signs of the condition.
Cheryl said: “The main thing is to raise awareness about this rare disease, which is horrendous. It would be really great if people could wear something orange, or if companies could display orange for the day or maybe people could do something with their social media profiles to show support.”
Cheryl says she suspected something wasn’t quite right with Harry’s eyes early on, but doctors couldn’t pinpoint anything. After a frustrating couple of years, Harry was diagnosed with CLN3 at Great Ormond Street Hospital at the end of last year after a blood test. He is one of approximately 42 children in the UK who are known to have CLN3.
Cheryl says the impact of the disease is frustrating for Harry, especially the sight loss which he has struggled to understand and cope with.
Harry, who attends main stream school, has short-term memory loss, although he is able to remember things that happened two years ago.
“It has been a massive learning curve for us but we take things one day at a time. Due to Harry’s memory problems, it is important to keep things as normal as possible and make sure he has fun as he seems to remember the happy things he enjoys.”
Cheryl and Ant have been told they are both carriers of Battens disease and have a 50 per cent chance of passing the disease on to any other children so they have made the decision not have any more children.
As part of his condition, Harry has some autistic traits and Cheryl says people will often stare or pass comment if he is having a difficult day.
“We want to create more awareness about conditions like Harry’s which are not necessarily visual disabilities. We do wear the sunflower lanyard in supermarkets so it would be really helpful if people are aware of the scheme and understand that he is not just a badly behaved child.”
INFO: If you would like to find out more about the Battens awareness day, www.bdsra.org/international-batten-awareness-day and for more information about the disease go here: www.bdfa-uk.org.uk.