Glasgow dad calls for more awareness of rare genetic disease in kids
Matthew Rich from Kinning Park has two daughters living with Batten Disease.
A Glasgow dad whose two daughters suffer from Batten Disease is asking us all to wear orange today to get people talking about the illness.
The rare genetic condition affects around 100 children across the UK, but doctors struggled to diagnose his eldest because they didn't recognise the symptoms.
Speaking to Clyde 1 on International Batten Disease Awareness Day, Matthew Rich said: "A lot of the symptoms of this condition are missed because they can relate to quite a few other ilnesses.
"The things to watch out for are difficulty developing speech or a loss of sight or hearing.
"We really want to educate other parents and share with them what we know because the sooner this disease is caught the more doctors can slow it down."
The OVO Hydro in Glasgow and the Scottish Parliament in Edinburgh will turn orange this evening to recognise the children who need 24-hour care.
Matthew added: "We struggled to get our eldest daughter Nicole diagnosed for two years and by the time we knew what was wrong with her she had lost a lot of abilities.
"I don't want any other parent to go through what we did.
"We got our younger daughter Jessica test at a much younger age and so far she is doing incredibly well."
Both girls get a fortnightly brain infusion in hospital which helps to improve their quality of life.
Mathew and his wife Gail work tirelessly campaigning to raise awareness about the symptoms of the illness.
Gail said: "It's really important we connect with the right people in the community because there are lots of us on this journey but everybody's journey is different.
"We've met so many great people around the world who we communicate with regularly."
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