A DAD has told of his distress after his daughter inherited his rare degenerative neuromuscular disease and is struggling with her mobility, aged four.

Matthew Birtwistle and daughter Eleanor Birtwistle both live with Charcot Marie-Tooth disease (CMT), which causes muscle weakness in the limbs.

But Mr Birtwistle – who inherited the condition from his mum June Birtwistle – says he does not want his daughter to be held back in life.

There are six people in his family who suffer from CMT: Mr Birtwistle, Eleanor, his mum June and three of her sisters.

Mr Birtwistle’s three siblings Graham Birtwistle, Jane Hill and Joanne Hill are not afflicted with CMT despite a 50/50 chance of them having it.

Around 23,000 people (or 1 in 2,500) in the UK are estimated to have CMT, which is named after the three scientists who discovered it.

Mr Birtwistle, 35, who was diagnosed with CMT at the age of 12 and lives with Eleanor and his partner Hannah Burns, 29, in Blackburn Road, Great Harwood, said: “It was a very strange of feeling when Eleanor was diagnosed.

“In a way, I beat myself up as I’m the reason why she’s got it.

“It’s devastating and of course I’d rather her not have it.

“But then I feel we have a special bond as she’s got the same condition I have and I know what she’s going through.

“I just want to make sure that she’s not held back in life as I don’t let it get to me.”

The disorder can cause uncontrollable pain, chronic fatigue and deformities in the hands, lower legs and feet, leading to balance problems and falls.

Mr Birtwistle said that Eleanor was diagnosed with the condition after having a blood test at six months old.

Mr Birtwistle, who works as a carer at a children’s home, said: “I knew from when Eleanor was born that she had CMT just by looking at the shape of her feet.

“She also walks in the same way as me and has other similar traits.

But Mr Birtwistle said that Eleanor is a ‘happy and healthy child’ and was due to start school on Tuesday at St Wulstan’s Primary School in Great Harwood.

He added: “We won’t know the impact of the CMT on her as it’s a progressive condition and is incurable and gets worse over time, although it’s not life-limiting.

“But she’s happy and healthy right now and we want her to make the most of life.

“I also want to raise awareness of CMT as I think there is a lack of understanding about it as people can’t see it.”

Mr Birtwistle has spoken during CMT Awareness Month,

which was launched by charity Charcot-Marie-Tooth UK on

Saturday.