Mum’s drive for funds

Research aim

The mum of a young Bannockburn boy with a rare genetic mutation is raising money to fund research into the condition.

Stacey McPherson, 37, waited for seven years before her son, Calum, 11, was diagnosed with the virtually unheard of CHAMP1 gene mutation.

The youngster requires one-to-one support in every aspect of his life. His main obstacle is his communication. He is non– verbal and uses an iPad app called Proloqu2go for communication.

Now Stacey is looking to raise money towards further study of the condition.

Stacey set up a web page for affected families around the world. She said: “One of our new American CHAMP1 families has been contacting various people over in the United States. We are now in a position to get companies involved with potential pharmaceuticals to do research into the potential of supplementing our children’s missing proteins.

“The companies may also be able to look into the possibility of gene editing, however, this is a lot further down the road so might not be possible.

“The main thing is we’ve got people’s attention now and we need to link in with them. The only problem we face is as it’s in America we will have to pay for it.”

She added: “Calum’s condition is rare and there’s not a lot of information on the mutation. We’re now the ‘experts’ according to our doctors as we have the insight into other champs through our Facebook community.”

To donate go to www. gofundme.com/5jtrwbc