Clachnacuddin Football Club confirm coach Keith Mason will take step back from football after daughter diagnosed with rare degenerative disorder Batten Disease
One member of Clachnacuddin’s coaching staff has stepped back from his role after his daughter was diagnosed with Batten Disease.
Keith Mason had been assisting manager Conor Gethins at Grant Street Park, but the club have announced this morning that he will be stepping away from football to prioritise time with his family.
That is because daughter Sophie has been diagnosed with the rare, degenerative genetic disorder Batten Disease (CLN-1).
The Batten Disease Family Association (BDFA) estimate that between one and three children are diagnosed with an infantile form (CLN-1) of the disease each year in the UK, meaning there are probably between 15 and 30 affected children in the UK currently.
There is no treatment for the disease, which causes progressive vision loss, seizures, disturbed sleep, stiff muscles, myoclonic jerks, loss of motor function, loss of the ability to swallow resulting in tube feeding and increased risk of respiratory infections.
A statement from Mr Mason released through Clach this morning reads: “On November 13 my wife and I received the most horrific news a parent could ever imagine. Our beautiful daughter Sophie has been diagnosed with a rare, degenerative disorder called Batten Disease (CLN-1).
“Although Sophie is currently in good health, we have started to see signs that her condition is progressing. Currently there is no treatment available for CLN-1, therefore her condition will continue to deteriorate and her life will slowly be taken away from her, then the time will come for us to kiss her goodnight for the last time.
“I have taken a step back from football to be with my family so that we can focus on making memories together and helping Sophie to write her own unique story in life.
“We would like to take this opportunity to express our heartfelt thanks to the Clach team, who have very kindly offered to donate their win bonuses for the remainder of the season, to help Sophie with whatever she may need in the future.
“We would also like to thank the club for their support. This gesture is testament to these guys as individuals and to the club’s values. We cannot thank them enough.
“We hope to be down at Clach Park as often as we can to cheer on Conor and the team. You will have one little warrior backing you!
“Once a Lily, always a Lily.”
A Facebook page, called Sophie’s Story, has also been set-up to raise awareness of Batten Disease and highlight fundraising opportunities.In the first post on the page, a mission statement was laid out, detailing: “Our primary focus is to make Sophie’s life as fulfilled and comfortable as we possibly can. As a family we will endeavour to create as many memories with her while she is still able.
“Yes, her life may not be as we had expected, BUT we will make sure that Sophie gets to live her own unique story.”
In subsequent posts Sophie’s parents also say their worst-case diagnosis has given Sophie a life expectancy of two-to-three years.
The family has been approached by people wanting to donate and contribute to Sophie’s care, with the latest post on the page reading: “We are so immensely grateful that people would like to support us through Sophie’s story. You are all Sophie’s Stars.
“At this time we don’t know what Sophie’s requirements will be and what type of equipment she will need. We will receive some assistance from NHS OT and physiotherapy, however we have been told that in some instances we may have to wait for up to eight weeks before receiving it – in Sophie’s situation eight weeks is a very long time to wait.
“Any money raised for Sophie that is not utilised will be donated to the Batten Disease Family Association (BDFA) and/or Children’s Hospices Across Scotland (CHAS).”
