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Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

Charity Registration SC047332 - The Fragile X Society Registered Charity in Scotland
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA

 

John's Story 

 

In this story we hear from Lorraine Peacock, writing about her brother, John. 

 

 

 

"Our fragile X journey as a family hasn't been an easy one. When John was a wee boy in the early 70's his condition was always put down to autism, 1 diagnosis was even Down's syndrome. The doctors told my mum he would never see past 16. Well, he's 46 now and better than ever.

 

It was 2000 by the time we eventually had a name; fragile X syndrome. By this time John was 31 and our mum had passed away the previous year. I was 17 at the time and made the choice to look after John, although there never would have been any other option, he's my brother and belongs with me at home. We come as a pair no matter what. After diagnosis I was tested to see if I was a carrier, which I'm not, but it was quite daunting at 17 having all this information thrown at me.

 

Left: John aged 15

 

A few years after that I discovered The Fragile X Society. It's always been a comfort knowing they're there for support, and it's good to hear how other families deal with living with fragile X. It's not easy looking after with someone with fragile X by any means, and over the years I've lost friends who haven't understood fully the commitment I have to John, but at the end of the day it's their loss.

My mum used to tell me about John as a child, and he was very difficult to say the least, even getting expelled from nursery for 'bad behaviour'. Over the years John attended various special schools but my mum took the decision to take him out due to the treatment of the kids during the 70's.

 

As a teenager he attended a day centre which he was very settled in due to the great key workers he had. After our mum passed away, as expected, John became quite unsettled as he didn't understand what had happened. It was very difficult to explain to him why his mum wouldn't be coming back.

Above: John celebrating his 40th birthday

We've had many ups and downs over the years but these days there's very few downs. For the past 20 years John has had small absences which last a few seconds and cause him to go vacant, then afterwards it's like he's on full speed wanting everything done yesterday.

 

He takes epilepsy medication for this on a daily basis but as he's got older this has had to increase. Apart from that he's healthier than me (and also has less grey hair than me!) even though he's 13 years older.

 

We don't know what the future may bring, but as John gets older he's becoming more tolerant of situations that used to get him agitated, including waiting for a bus or standing in a queue.

 

The main thing was when I got married, we thought this would be a very anxious time for him, but he took it in his stride and sat talking to guests and singing along to the music. He gets on great with his new brother in law, as he likes to call him, and loves nothing more than having a bit of banter with him.

When you get John in a good mood he'll sit laughing and joking all day - just ask his carers who he has all given nicknames! He also likes to try and pair them off with the nearest person, whether they're married or not, but they all take it in good humour.

 

He has one to one care after his day centre closed. Due to this I'm able to go to work (as a carer) and John gets to do the daily activities that suit him. He has adapted better than we could have imagined, and his social skills have improved.

 

Right: John with Lorraine on her wedding day!

 

John needs assistance on a daily basis outside the home. Although he can walk he has no sense of danger around him. Since leaving the day centre he now attends various clubs with his peers, and also tends to an allotment where he grows onions and potatoes, which he is very proud of". 

 

Thank you to Lorraine for sharing John's story!