A Limavady woman who has campaigned tirelessly for her son to receive a potentially life changing drug has been hailed as an “exceptional ambassador” by a national charity.
Laura Smith’s son, Callum, suffers from a condition known as Duchenne Muscular Dystrophy, which causes his muscles to slowly deteriorate and drastically reduces his lifespan. Life expectancy for people diagnosed with Duchenne in Northern Ireland is 19 years.
Laura has been told Callum can’t have access to medicine - a drug called Translarna - that could dramatically extend his life and alleviate his suffering.
Undeterred and determined to help others, however, Laura and her partner Paul McCorriston and family have been campaigning since ‘Team Callum’ was established, raising funds for Muscular Dystrophy UK.
In thanks for the money raised by Team Callum, Laura and her family were treated earlier this week to a special afternoon tea at the Roe Park Resprt in Limavady.
Cathryn Gibson, Regional development manager for Muscular Dystrophy Uk, said: “We are celebrating one year of Team Callum, which Laura set up last January. She has raised £17,833.88, which is an amazing amount of money. She is definitely is one of our best fundraisers because not only has she raised a huge amuont of money, but she has also raised awareness in this area too. We are delighted to have her on board. She’s a real ambassador for us in this area. I thought it was good to recognise Laura. She is the face behind Team Callum, and this was a nice way to thank her for what she has done.”
Cathryn explained the money raised by Team Callum goes to the Duchenne Research Breakthrough Fund.
“All the money goes into research projects into Duchene Muscular Dystrophy, which is what Callum has, and also for our campaigning to allow people to have access to Translarna. If we didn’t have people like Laura fundraising we wouldn’t be able to be doing the extent of research that we are doing. and some of those research projects will be coming through and those drugs will be going into clinical trials. We’re in a time of a lot of hope.”
Laura said the fundraising success has only been made possible thanks to support from family, friends, and strangers.
“I don’t do it for the recognition, because this is something we’re doing to help others. It is nice though to see the recognition for everyone who has supported Team Callum,” said Laura.
“It’s not just me, it’s Team Callum and everyone who supports us. To see how much effort the community has put in, well people are so good and I hope they will continue to support us through the following years.”
In the meantime, Laura is hoping to meet health minister, Simon Hamilton about Callum’s case. She has applied for Translarna to be made available through a mechanism for specialist drugs to be made available known as an ‘Individual Funding Request’, only to be told no.
“We need the drug. It’s getting people to realise that,” said Laura. “Simon Hamilton said before it wouldn’t be right for him to intervene. Then why is Simon Hamilton the health minster? That would be my question to him. I have asked for a meeting with him, but that has been refused, but MLA Clare Sugden has written to him again and asked him, so I await his reply.”