A father has told of heartbreak after son inherits the same rare degenerative condition and is now struggling with mobility — aged just 5
A father has told of his heartbreak after his son inherited the same rare degenerative condition as him and is now struggling with mobility — aged just five
Andrew Frerichs, 51 and son Calum, 5, both live with Charcot-Marie-Tooth disease (CMT), a condition which affects the dexterity of their hands and legs.
But dad Andrew does not want his son to be disadvantaged by the disease, which caused him some pain growing up.
Andrew was diagnosed aged 11, after inheriting CMT from his late father. His sister Beth Popa, 50, and her nine-year-old twins also suffer from the disease.
Calum’s twin sister Amber, and brother Dylan, 8, did not inherit the disease from their father, despite a 50/50 of them having it.
Dad Andrew said: “We don’t put any limits on Calum. Anything he wants to do he can do.
“He could have it much worse than me, I know five-year-old boys who have it and are in wheelchairs, so we want to do as much as possible with him now.
“He knows his legs are not got and has legs like Daddy’s, but he doesn’t realise he has limitations, and sometimes hurts himself doing things he can’t manage.
“He might fall over when he tries to run if he loses his balance, but he just carries on. It doesn’t hold him back.”
Sadly for Andrew school life was very difficult.
He explained: “My school was very physical, sports-orientated school and I struggled – a lot.
“I would fall all the time and couldn’t run or kick a football like the other kids did.
“I liked sports, but because I had CMT I couldn’t keep up and I was picked last for teams, which did nothing for my self-confidence.”
The Falkirk father has had to give up all of his hobbies and his job as a chef after it became too dangerous because of his condition.
Andrew said: “Being a chef became too dangerous. There were too many hots things I could drop or spill if I lost my balance.
“I have some pretty nasty cuts from knives as I struggled to use them.
“But I went back to university and got a business degree, and now work in the retail business in Glasgow.”
Andrew also had to give up on his love of fishing, snooker and riding his motorcycle.
His condition prevents him from tieing knots for fishing, bridging his hand for snooker and changing gear on his bike.
Day-to-day life is different for the family, as wife Alison juggles caring for Andrew and Calum, with her job as a bank manager, and looking after Amber and Dylan.
“First thing in the morning Alison massages my legs so I can walk, and last thing at night she stretches Calum’s muscles”, said Andrew.
“I can’t open simple things, like packets of ham, or cartons of milk, I can’t put tokens in trolleys at supermarkets, I can’t even tie my own shoe laces.
“When the boys play football and their lace comes undone, I need to ask someone else to tie them.”
But gadgets are helping Andrew carry out simple day-to-day tasks and giving him a new lease of life.
Andrew would be completely unable to walk without the support of Silicone Ankle Foot Orthosis (Safo’s).
The revolutionary technology works by supporting the front of his leg down to the top of the foot, helping Andrew to lift his foot during walking.
Andrew now uses a specialised set of cutlery as his dexterity problems mean he struggles to pick up and use ordinary ones.
Unable to grasp zips or do up buttons, Andrew also has devices that help him when he is getting dressed.
But the father of three is finding it difficult to sit on the side lines as he is not always able to do things with his children.
“Calum loves to go swimming. People with CMT might not be able to walk very well but we can swim”, said Andrew.
“However I can’t walk from the changing room to the pool – it’s just physically impossible because of the way I walk on my nails – walking on hard flooring is agony.
“So he goes swimming with his mum or grandparents.
“Going out and about and going on holiday are the biggest nightmares for me. I need to look at what things we can’t do, rather than things we could.
“Alison wants to go to Spain, and all go to a water park, but I won’t be able to do anything with them, I’ll just be sitting spectating.
“I would love to be able to take part with them like every parent would. I want to play football with my boys and run around with them but it’s just not possible.”
Charity Charcot-Marie-Tooth UK is launching CMT awareness month today (Fri) and will celebrate Global CMT Awareness Day on Friday 29 September.
Karen Butcher, the charity’s chief operating officer in the UK, said: “As a charity supporting people with CMT, it is our role to speak up on their behalf and help them with the challenges they face.
“In addition to this, we also offer advice and support to those who think they might have the condition but haven’t been diagnosed yet.
The charity offers advice on how to manage the condition as well as support with
benefits, jobs and family issues.
Readers wanting to find out more should visit www.cmt.org.uk or contact 0800 6526316 or donate by visiting www.justgiving.com/CMT
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