Sick children’s charity to raise £250,000 yet again

Banbury Cake: George Hedges, chairman and secretary of the charity pictured with wife Pamela, left, and friend Carole West George Hedges, chairman and secretary of the charity pictured with wife Pamela, left, and friend Carole West

AS the New Year chimed in, George Hedges re-set the counter to start the daunting task of raising £250,000 all over again.

Retired chief constable Mr Hedges heads up charity Rosy (Respite Nursing for Oxfordshire’s Sick Youngsters) and every year it must raise tens of thousands of pounds to keep its vital service going.

Its nurses work 24/7 to look after sick or terminally ill children in their homes to give their parents or carers a desperately needed few hours’ break.

Every year Mr Hedges, 72, and his small committee of six, set out a plan of action to raise the cash so they can continue help the 75 families.

This year they will stage a string of fundraisers but are also urging people to organise their own.

Banbury Cake:

George Hedges

Rosy pays for 10 nurses – the equivalent of six full-time nurses – or “angels” as grandfather-of-six Mr Hedges calls them He said: “Rosy nurses go around homes, they do the medical care, and become good friends with the families. It’s in addition to the medical care provided by the health service. Most of the children are terminally ill. Oxford is the sort of place if you need medical care, you get the best in the world.”

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But, he said, the respite care was sadly lacking.

As Rosy’s chairman and secretary, Mr Hedges was awarded the British Empire Medal in 2012 for his services to sick children.

He got involved in 2004 through the charity’s founders nurse Bev Wilson and her brother Craig Milner. Three years later he took over its running.

Over the past decade the charity has gone from strength to strength. It has paid to kit out each of its nurses – previously they met in car parks to exchange equipment, as well as buy families necessary equipment such as SATS machines which monitor breathing, and fund the important respite care.

Mr Hedges said: “If we get more money we will employ more nurses. I just hope to keep it going with the support of the public.

“These families have taught me so much. I thought I had seen it all in the police service. I have sat on the sofa to tell a couple their daughter has been murdered. But when you see what these families go through, I’m humbled.

“It’s a privilege to serve them. The biggest thing of all is we know it makes a difference It’s very uncertain as to what these families will face.

“The biggest thing of all for these families is to know that people care. It means more to them than anything else in the world.”

Coffee and curry in parents’ support system

As part of the charity, Mr Hedges and his wife Pamela have developed a support system for the Rosy families.
Every fortnight, come rain or shine, the couple alongside friend Carole West run a market stall selling bric-a-brac in Gloucester Green to raise extra cash to support Rosy families.
This, along with talks he gives about his 35-year police career raise about £9,000, and that money is used to host coffee mornings and curry nights at their home in Kidlington for parents, as well as paying for counselling for families and equipment for children.
The idea was to build a social network between the families so they can support each other – so if someone is having a bad day all they have to do is just pick up the phone.
It also means every penny raised from events or donations goes straight to looking after sick children.
Mr Hedges was a former assistant chief constable of Thames Valley Police who went on to become Durham’s chief constable.
During his time in the force he was awarded the Queen’s Police Medal and was also responsible for the security of the Royal family and the Prime Minister.

Liaison officer lost her own child

Banbury Cake:

Katherine Pixton, husband Andy, and their son Jack, who died in 2011 aged seven, were supported by the Rosy Nurses for more than five years

 

Contracts specialist Katherine Pixton now sits on the Rosy committee as the family nurses liaison.
She, her husband Andy and their son Jack, who died in 2011 aged seven, were supported by the Rosy Nurses for more than five years.
Jack was diagnosed with degenerative neurological condition taysachs just after his first birthday and was not expected to survive past age three.
Mrs Pixton, of Wantage, said: “He was born in 2004 and was a perfectly normal baby, just absolutely gorgeous.
“At about four/five months we started to notice he was not quite the same as other children. He was startled very easily and just not right.
“He got as far as sitting up and doing a few other things, and basically regressed back to being a new born baby.”
Little Jack eventually became immobile, was unable to speak and had to be fed by a tube. He sadly died in May 2011 while at Helen House for routine respite.
Jack was looked after by the Children’s Community Nursing Service and they put the family in touch with the Rosy team.
Their visits gave Jack’s parents some much-needed respite.
The couple were constantly sleep deprived as Jack never slept through the night.
So once a week a Rosy nurse sat with Jack while his parents were able to sleep through until 7am.
Mrs Pixton said: “They were a Godsend. We could not have got through the last three or four years without them.
“Just knowing one night a week someone was sitting beside Jack and we could switch off and that was it until 7am in the morning.”
She said the social activities organised by Rosy, as well as counselling and providing equipment was as valuable as the nursing care.
She said: “We would have found it so hard to give Jack the quality of life he had, without them.
“Because of that I wanted to make sure it was still there for other families.
“I think just being with other people that have been through the same situation as you, that’s a help.
“Everybody’s grief journey is different. It’s just walking alongside people.”

Nurses help world’s only sufferer

Banbury Cake:

Michaela Middleton and husband Justin, son Finley, five, and his sister Lucie

Michaela and Justin Middleton get weekly help from Rosy nurses to help with their son Finley, five, who was recently diagnosed as the only person in the world to have GINS1, an extremely rare genetic condition that affects his growth and immune system.
The family, along with Finley’s sister Lucie, two, live in Arncott, near Bicester.
For the first year of Finley’s life he lived in hospital in Aylesbury, Oxford’s Children’s Hospital and Great Ormond Street Children’s Hospital, London, while doctors tried to find out what was wrong with him.
Born weighing just 1.74 kilos (3.13lbs) the youngster still only weighs seven kilos.
His diet is supplemented with a feeding tube to ensure he gets enough nutrition.
Mrs Middleton said: “Cognitively he is where he should be but he’s just small and prone to infections.”
Just three months ago, the family were able to finally put a name to Finley’s condition, GINS1, and doctors told the family it is so rare that the five-year-old is the only person in the world to have it.
Mrs Middleton, 45, who works for the ambulance service, said: “I can’t big up enough how much Rosy do for us. They are marvellous.
“Sleep for us tends to not exist really. The nurses coming in just relieve the pressure as at home as you still try to deal with normal chores.
“Sometimes they come in a sit with Finley, then I might go and have a bath as normally it’s a three-minute shower.
“Sometimes they sit and we will chat and I can air things. It’s all confidential and impartial.
“It does make a difference. You have to have trust in the people dealing with a precious child, and they give you that.”

Fundraising events 2014

Banbury Cake:

Arlo Braund, seven, and his dad Chris doing a 10km walk in the Wychwood forest at Cornbury Park in aid of Rosy

APRIL 26:  Rosy Walk, organised by Tania Rotherwick, goes at Cornbury Park to Spelsbury, Ditchley Park, Kiddington, Blenheim and back to Cornbury.

MAY 11:  Stately car boot sale, at Cornbury Park, Finstock entrance, 9am to 1pm.

JUNE 27:  VollyBang in Oxford. More details nearer the time.

DECEMBER 5: Ditchley Park Christmas drinks.
People are urged to organise their own fund raisers for Rosy.

Factfile

Rosy is a charitable support group which operates under the umbrella of the Oxfordshire Primary Care Trust Charity.
It provides additional respite care to Oxfordshire’s sick youngsters who are nursed in their own homes.
Its patron is Lady Rotherwick.
Rosy was set up in 2002 by three nurses – Bev Wilson, Andrea Lambert and Debbie Roberts – and Bev’s brother Craig Milner, who was chairman.
Currently it funds 10 nurses.
Its aims are to:
GET more nurses to provide more respite for families.
Equip the nurses and homes with the appropriate specialist medical equipment.
Provide suitable sensory equipment/toys for youngsters
Develop its family support network. Enable the carers to relax with others who have similar problems so that they can share experiences and realise that they are not alone.
Support siblings of the sick children who can sometimes be forgotten.

ROSY: For more information about Rosy, or to help out, organise a fund raising event, or to donate bric-a-brac for the market stall, call 01865 848696 or email  help@rosy.org.uk or view rosy.org.uk

 

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