Christmas charity song launched by boy who communicates by blinking

December 7, 2012 — Maureen

Christmas charity song launched by boy who communicates by blinking

 

Published on Tuesday 4 December 2012 12:01

HE has spent most of his Christmas Days in hospital, but now a young boy who can only communicate by blinking is looking to bring some festive cheer to others with the release of a Christmas single.

Adam Bojelian, 12, who has cerebral palsy, is blind and suffers from a severe seizure disorder, is donating 50p from every download of Christmas Gibbons to the Children’s Hospice Association Scotland.

And the Forthview Primary pupil has been given a boost after getting the backing of film star Ewan McGregor. (more…)

Posted in Carers, cerebral palsy, Scotland. Tags: , , . No Comments »

Jane Holmes: Who cares for the carers?

November 12, 2012 — Wendy

What happens when the carer becomes ill?

By Jane Holmes
November 12, 2012

Jane Holmes is chief executive of Wokingham-based charity Building for the Future which provides support and activities for disabled children.

She set up the charity after her daughter Kitty was born with severe cerebral palsy.

Yesterday, I was talking to a single mum of a disabled adult about respite provision.

My friend, whose beautiful young adult daughter has the developmental age of a baby, has found herself having to fight to get the help they need.

Of course she’s been through this once, when her daughter was a child, but the whole process starts anew at age eighteen.

What would you do if your adult child needed more care than the average baby? Just imagine it for a moment. And let’s not be complacent … all of our kids are just one car crash away .. (more…)

Posted in Carers, charities, disability. Tags: , , , . No Comments »

‘there are times I could just run out the door’

October 5, 2012 — Wendy

As told to Joan McFadden Susan Love, a nurse, lives in Paisley with her husband Willie and 19-year-old son Owen, who has cerebral palsy and hydrocephalus. Here, she tells Owen about the love – and the guilt – she feels for him

You’ve always been a bit of a surprise to me, right from the moment I found out I was 26 weeks pregnant at the age of 19.

My first reaction was ‘My mum is going to kill me’ and she wasn’t jumping for joy when I told her. I was in a steady relationship and training to be a nurse but everyone in my class had been warned that if anything stopped us sitting exams we’d have to start from the beginning. There had been an outbreak of sickness in my ward so when I started feeling ill my GP thought I’d picked it up from my patients. I was still suffering from terrible tiredness two weeks later so I went back and saw a locum. I quite like a bit of drama but I wasn’t prepared in the slightest when the nurse came bounding through the door and said: ‘You’re pregnant!’

(more…)

Posted in Carers, cerebral palsy, family, Scotland. Tags: , , , . 1 Comment »

Norman Lamb, King’s Fund – Integration

September 11, 2012 — Wendy
September 11, 2012

Transforming Local Services
A reshuffle is a strange thing.

I’ve followed the health reforms pretty closely so I’m relatively up to speed.

But often, new ministers find themselves in departments where they know only the bare bones of the policy. And they’re expected to turn themselves into experts overnight.

I’ve been an MP long enough to hear my fair share of new ministers read out speeches in the Commons and clearly have absolutely no idea what they’re talking about. The crueller members of the opposition can sometimes make it a bit of a trial for them.

But the machinations of government can’t just creak to a halt as the new people find their way around. So new ministers rely on ever-present civil servants to guide them. They rely on ministers who haven’t been reshuffled to keep a hand on the tiller. And they rely on their fellow new ministers to be conscientious, decisive and creative about their own parts of the portfolio. (more…)

Posted in Carers, cerebral palsy, disability, DOH, elderly care. Tags: , , , , , . No Comments »

Mum joins political elite to fight for carer’s rights

August 28, 2012 — Wendy

CLARE LALLY is Scottish Labour’s newest addition, bringing her experience of caring for her disabled child to the Shadow Cabinet.

Clare will make sure Labour understands the challenges facing families like hers
Clare will make sure Labour understands the challenges facing families like hers

A  DEVOTED mum is taking her experience of caring for her severely disabled daughter to the frontline of Scottish politics.

Clare Lally is to join Labour’s shadow cabinet as their first “Carers Champion”.

The role will see the 31-year-old, who has no previous political experience, advise Johann Lamont’s party on the challenges facing Scotland’s 660,000 carers.

Clare, of Duntocher, Dunbartonshire, said she was delighted to help influence key policy.

She said: “I have always been a Labour supporter. But to actually be able to contribute and help make a difference is a better opportunity than I could have asked for.”

Clare and partner Derek Steel, 36, provide round-the-clock care for Katie, five, who was diagnosed with quadriplegic cerebral palsy after a difficult birth. (more…)

Posted in Carers, cerebral palsy, Scotland. Tags: , , . No Comments »
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