Inverness football coach steps down to care for daughter diagnosed with rare disease

An Inverness football coach has stepped away from the pitch after his daughter was diagnosed with a rare degenerative genetic disorder.

Keith Mason, first team coach at Clachnacuddin Football Club, has revealed his “beautiful” wee girl Sophie has been diagnosed with CLN1 Batten disease, also known as infantile neuronal ceroid lipofuscinosis (NCL).

It’s a fatal condition that affects the nervous system, and children living with the condition will experience decreased muscle tone, intellectual and motor disability.

They become totally dependent on families and carers for all of their needs, and there is sadly no cure. 

‘The time will come for us to kiss her goodnight for the last time’

Releasing a statement and a series of family photographs on the Clachnacuddin’s Facebook page today, Mr Mason revealed the “horrific” details of his daughter’s diagnosis.

He said that while Sophie is currently in good health, they are beginning to see her symptoms progress.

With support from the club, he confirmed he has taken a step back from coaching to focus on his family.

“On the 13th of November 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, genetic disorder called Batten Disease (CLN –1),” he said.

“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 to that we can focus on making memories together.

“Helping Sophie to write her own unique story in life.”

Clachnacuddin FC rally around Mason family

Supporters and club members have rallied around the family offering love and support following news of Sophie’s diagnosis.

Keith also revealed the Clach team has offered to donate their winning bonuses to Sophie.

In a statement online, a spokesperson for the Inverness-based club said: “From everyone associated with The Clachnacuddin Family, we send our love to Keith, Lizzie and all connected to Sophie.”

Mr Mason issued a heartfelt thanks to club members for their generosity.

He added: “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 a testament to these guys as individuals and to the clubs’ 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.”