When BBC’s Countryfile announced that their ‘Children in Need’ charity ramble was coming to Ely, without hesitation I was among 1,999 people who applied instantly to take part and was lucky enough to be picked out of a ballot and win a place to take part in such an amazing event.
On the morning of Saturday 7th October, the day of the charity ramble, everyone gradually gathered on the green of the Ely Cathedral site and dutifully queued up before having our IDs checked and we were presented with our identifiable yellow Pudsey hats before embarking on yet another queue to pay for a welcome cup of coffee as the cold was beginning to set in.
The Ely Cathedral green was now brimming with a sea of yellow hatted ramblers as yet more queues began to form for a photo opportunity with one of the Countryfile television programme presenters, Ellie Harrison, and the mascot himself Pudsey, before being put through our paces with some limbering up exercises instructed by a Keep Fit expert.
Then all 1,300 of us slowly trudged off to enjoy the picturesque sites of Ely.
Many of us got chatting along the way meeting up with people like the kilted couple David and Angus who were taking a break from their own business, and many enthusiastic single ladies who seemed seasoned ramblers only happy to be part of this once in a life time experience.
Those who were raising money for the ‘Children In Need’ charity either through sponsorship or/and a ‘Just Giving Page’ were asked by the Countryfile presenter Ellie Harrison if they wanted to talk on camera about a special person they wanted to highlight about their everyday struggles and how they managed on a daily basis. I declined such a request although I was aware of one lady’s story who had touched me greatly and did not wish to embarrass her or her daughter.
However, she was happy to speak to readers of Littleport Life Magazine about her life caring for a young 19 year old with Retts Syndrome.
Tina Copsey and her daughter Elle live in Littleport, together with her two older children and a grandson, and I met up with them both one Friday afternoon.
Having briefly met Elle previously at MCC363’s Crowning Around event, I was delighted to see her face light up when I presented her with Sharon Bishop’s superbly knitted Pudsey and Blush chocolate orange holders which just happens to be Elle’s favourite chocolates.
I asked Mum Tina how she has managed, and whether she had been getting the support she needs.
“Elle was born a normal baby. She was around 6 or 7 months when I mentioned that she was sleeping a lot and I had to wake her to feed her and as a mother of 4 other children you have that instinct that something isn’t quite right.
“There was an incident where Elle poured a jug of hot water over herself, but luckily her Dad Dan was on it right away dousing her with cold water, but we still had to go to the hospital. We were living in Plumstead, Woolwich, London, so Greenwich was the nearest hospital.
The next day we had Social Services on the door because I had been reported – which did give me a chance to explain to them what was going on and the help I needed.
I reeled off all the problems I was experiencing with Elle because right at the beginning the medical professionals couldn’t help me saying that she was far too young to be diagnosed. And once they listened to me I got a referral which took two and a half years for a proper diagnosis, revealed Tina.
Retts Syndrome is a genetic brain disorder which makes Elle susceptible to infections and seizures nearly every day.
Elle who also has rheumatoid arthritis, is non-mobile and nonverbal, although able to speak random words. Since coming up to Littleport 10 years ago to be near Tina’s parents who live in Coveney, it has been one constant struggle receiving no support, no physio, and no Occupational Therapy.
Tina who has been on a roller coaster ride with generally being let down by those who might have been expected to help in a professional capacity, looks like she is finally being rewarded for her perseverance and dogged determination.
“Elle has spent a year with me at home which is great, but it has meant that she’s not getting any help or being educated. I was unaware of the new Highfield Littleport Academy LINC (Learning, Independence, Needs and Care) for 19 to 25-year-olds.
It was only when I bumped into Elle’s old OT worker who suggested I contact them that I instantly got an interview. They offered Elle 3 days a week from 9.30 am to 3.45 pm to start off.
“It means Elle will again be able to go to swimming which she loves by using their hydro pool; shopping, cooking and eye gaze sessions, which means she can communicate through her laptop, and better still she will be with her own peer group. Already she knows three of the girls who attend”, Tina told me.
It’s hoped that through some local organised fund-raising in 2019 it will be possible to raise the funds needed to buy the £10,000 eye gaze equipment that would enable Elle to communicate from her wheelchair at any time.