I believed I used to be simply clumsy once I began falling over – however I really had a uncommon situation

A DAD-of-two thought he was simply clumsy when he began falling over, however he really had a devastating uncommon situation.

Georgie Davey, 32, had been unknowingly dropping management of his fingers and legs since he was a toddler.


Dad-of-two Georgie Davey has a uncommon situation that’s seeing him slowly lose management of his fingers and legsCredit score: BPM
But when the 32-year-old was a child he was just called


However when the 32-year-old was a toddler he was simply known as “clumsy”Credit score: BPM

And it turned out he had a uncommon degenerative situation which deteriorates muscle groups, inflicting his fingers and toes to twist as they slowly cease to operate.

The toughest factor for the London dad-of-two is dropping his independence as he was born able-bodied earlier than being identified with Charcot-Marie-Tooth illness (CMT).

Georgie informed MyLondon: “It was one thing that as a toddler began to develop.

“As a child I used to be ‘clumsy’ – that was the phrase getting used – I might typically fall over.

I lost use of my hands to rare disease but now I've had them replaced in world first
I could be paralyzed for LIFE after catching rare disease on trip to Cyprus

“I might stroll on my tiptoes which they thought was a section, then my toes began to twist after which I used to be referred to hospital and was out and in having exams on a regular basis.

“Having been an able-bodied particular person a number of years in the past, it is exhausting to not look again at what I might do then that I am unable to do now, even all the way down to driving a motorcycle as a toddler – I used to like that.

“Two or three years in the past I used to like cooking however now due to my fingers it is too harmful for me to cook dinner.

“My independence has slowly obtained much less and fewer.”

It took Georgie a very long time to return to phrases with what was taking place to him.

He informed MyLondon: “Over the course of the years I might have conferences on the hospital each six months and I began noticing that every six months there have been increasingly more issues I used to be unable to try this I might final time.

“All through the years it has its impression.

“Slowly, issues have been launched so I now put on splints on each toes to cease me from tripping and over the past 12 months or so that they’ve step by step launched wheelchairs for fatigue administration.”


Georgie nonetheless does not know what a future with CMT seems like for him, because of the rarity of the illness.

He added: “The issue is that with my situation there are such a lot of variations and they’re but to inform me which pressure I’ve.

“For me it is nonetheless a grey space as a result of I do not know progression-wise how this may have an effect on me in six weeks, six months, six years.

“It is one thing I strive to not look an excessive amount of into as with Google you’ll be able to find yourself in a rabbit gap simply serious about what the situation could possibly be like subsequent 12 months.”

One in every of his principal priorities by way of that unknown time is to be a job mannequin for his youngsters.

Georgie mentioned: “I’ve obtained youngsters, one is 2 and one is 5. The five-year-old is extra educated and understands what’s going on.

“Solely a few months in the past we went away to Devon as a household and I made a decision to make use of a mobility scooter which is one thing I would not have accomplished earlier than.


“Being a younger bloke who seems like there’s nothing flawed, which is the widespread notion folks have, I am all the time cautious that folks shall be pondering: ‘Why does he want that wheelchair?’

“But it surely’s the perfect factor I might have accomplished as I used to be in a position to entry actions and do issues with my youngsters that I in any other case would not have accomplished.

“I might go longer distances and now that I’ve a mobility scooter my daughter calls it ‘daddy’s bike.’

“The place a 12 months in the past I used to be attempting to defend her from my situation, now that she’s beginning faculty it is necessary for me to normalize this for her and for my son, to allow them to see that that is regular for our household.

“From my perspective I simply need her to be a child and it is necessary for me to be a job mannequin for her, so I’m going to work and inform her how necessary it’s to work in order that we are able to get good issues.”


Final 12 months, Georgie was informed that if he give up his job, the modifications he wanted for his house – to assist him as he misplaced mobility – can be coated.

Whereas if he continued working he and spouse Georgina must cough up the £27,500.

However, he mentioned: “Quitting my job although, that is not me, I wasn’t anticipating a freebie or a handout.”

Then, this 12 months, an occupational therapist accomplished the ultimate evaluation of the household’s house, and so they have been informed that determine had climbed to £47,000.

Georgie mentioned: “It bewildered me to be trustworthy with you. They mentioned that it was one thing to do with my spouse working part-time, however it made no actual sense to me.

“That was a blow however I used to be focussing on that determine and questioning how a lot I can elevate and if I have to spend that a lot.”


The priorities have been adapting the pair’s toilet and buying a self-cleaning bathroom.

However, there are different adjustments that have to be made – like fixing the household’s even driveway that Georgie recurrently falls on.

Which is why Georgie’s cousin Beth Scudder has now arrange a Gofundme web page to assist elevate cash.

However the 26-year-old mentioned that itself has been a journey as her cousin has “all the time been a proud man.”

Nevertheless, she’s decided to assist Georgie and his household navigate CMT in anyway she will be able to.

Beth added: “It is one thing that we might by no means heard of, it is such a uncommon situation that we’re studying about it as we go.

“For Georgie there could possibly be hurdles within the subsequent few years that we do not learn about and everyone seems to be studying as we go together with it.”

Georgie's cousin Beth Scudder, next to him on the left, has set up a crowdfunding page to raise money for his house adaptations


Georgie’s cousin Beth Scudder, subsequent to him on the left, has arrange a crowdfunding web page to lift cash for his home variationsCredit score: BPM
Georgina and Georgie don't know what the future holds for them, but the young dad is convinced he wants to be a role model for their children


Georgina and Georgie do not know what the longer term holds for them, however the younger dad is satisfied he needs to be a job mannequin for his or her youngstersCredit score: BPM

Leave a Comment