Vicky’s remarkable courage inspired me to help others

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Vicky’s remarkable courage inspired me to help others

www.worcesternews.co.uk/features/3736709.Vicky___s_remarkable_courage_inspired_m\

e_to_help_others/

Wednesday 8th October 2008

By Connell

THE raw courage of a young woman who lost her fight against severe juvenile

arthritis has made her mother more determined to help others like her.

Vicky was just 26 years old when she died in hospital following

complications arising from juvenile idiopathic arthritis.

Her condition had stopped her growing properly and she reached an adult

height of under four feet tall, she needed two hip replacements and over the

years had faced long stays in hospital.

She also suffered excruciating pain, which left her unable to sleep, was

sometimes wheelchair-bound and struggled to find suitable clothes and shoes

to fit.

But all this did not stop her studying hard at the city’s Blessed

Oldcorne Catholic College before moving on to Worcester Sixth Form college

to pass her exams to gain a place at Oxford s University where she

achieved a high honours degree in fine art.

She rarely lost her terrific sense of humour even in the face of some people’s

ignorance and tactlessness.

Vicky also never lost her drive to succeed and was halfway through her

masters when she died at the Radcliffe Hospital in Oxford in April of

this year.

Her mother, Caroline , of Worcester, knew that something was wrong with

her daughter, the youngest of her six children, when she was just 13 months

old and after many months of hospital visits when one of her wrists became

swollen, a symptom of the disease juvenile idiopathic arthritis. In Vicky’s

case the condition was especially complicated and painful; it affected not

only her joints but also her internal organs, meaning her whole body was

often wracked with pain.

Caroline was one of three founders of the Children’s Chronic Arthritis

Association, a now national charity with international links based in the

city since 1990. It became a registered charity in 1992 to help and support

children and their families, professionals and carers with this cruel

disease.

Mrs said: “Vicky was a very important part of my life – I felt even

after her death I should and would continue. She never gave up so neither

will I. She had incredible courage and her courage has been an inspiration

to me and so many others.

“The pain is awful. Mothers usually have the answer to most things in a

child’s life and can sort them out but with this you can’t.

You can’t make the pain go away.

You wish you could have it for them.

Very often they can’t take part in activities that their peer group can.

It can be quite isolating for them.

It’s a very unpredictable and up and down disease and it can vary

day-today.â€

The brothers and sisters of someone with JIA may become withdrawn,

frightened or resentful of the attention and care their sibling receives.

Parents may feel guilty and anxious because they have to focus a great deal

of time and attention on a child who has this condition.

Caroline was apart from her husband, Tony, and her other five children on

numerous occasions, sometimes for months on end while she lived with Vicky

in hospital in London.

Their family has always remained close but others have not been so

fortunate.

Sometimes the strain is too much and it can literally tear a family apart.

“I have seen so many families break up over this but it has definitely

brought mine closer together. Some fathers feel very left out and anxious

but are unable to express their feelings. They feel they have to stay strong

for the family,†she said.

Since Vicky was diagnosed, Caroline has also felt the need to battle against

the misconceptions people have about arthritis.

Many people still think it is something that only happens to elderly people.

Caroline, who is talking about the disease to mark World Arthritis Day this

Sunday, October 12, also says it is important to remember that very few

cases of childhood arthritis ever lead to death and new research and

treatments mean this is less likely than it has ever been and the outlook

for these children is so much more positive.

The aim of the charity is to provide support and help for the children and

their families but also to enable children with JIA to live happier, more

fulfilling lives.

One of its main events is an activity weekend where there are three main

objectives, firstly to let these children and families do activities that

they would never have done before such as archery, canoeing, climbing and

many more.

Secondly, health professionals from all over the UK attend the weekend to

run educational and informational sessions for the parents. These sessions

are an opportunity for everyone to ask questions and share experiences with

other families in the same situation.

It is also a chance for everyone to have fun and meet people who experience

the same challenges every day that they do.

“I still find it wonderful to see these children doing things like raft

building and going out into the middle of the lake on something they have

made with their own hands.

“The look on their faces is amazing and truly inspiring,†she said.

The late Dr Barbara Ansell, a consultant at Northwick Park Hospital in

Harrow, was a great supporter of the charity.

Clinical support for the charity remains strong with its key patrons

Professor Woo and Dr Hasson of Great Ormond Street Hospital

and Professor Taunton Southwood of Birmingham Children’s Hospital, actively

supporting the charity.

Although medical professionals now know more about the condition itself,

they do not fully understand what it is like to live with arthritis 24 hours

a day.

This is where the CCAA’s area family contacts come in – families who can

offer to others the benefit of their experience and advice.

The executive committee which runs and manages the charity is made up of

parents, professionals, sufferers and family members to represent the needs

of all those affected.

The charity receives no government support and relies completely on

donations from individuals, businesses and other organisations.

FACTFILE ABOUT JUVENILE IDIOPATHIC ARTHRITIS

WHAT IS JUVENILE IDIOPATHIC ARTHRITIS?

A disease that occurs in children and young people where one or more joints

become inflamed for at least six weeks. It can start at any age.

HOW MANY PEOPLE SUFFER FROM CHILDHOOD ARTHRITIS?

About one in a 1,000 children in the UK.

WHAT CAUSES IT?

The cause is not precisely known but it is an area of active research.

WHAT ARE THE TREATMENTS?

Steriod joint injections provide relief from inflamed joints. Nonsteroidal

anti-inflammatory drugs (NSAIDS) are pain-relieving drugs, which reduce

inflammation.

Methotrexate, anti-TNF drugs, complementary and physiotherapies are also

used.

WHAT HELP IS AVAILABLE LOCALLY AND IF YOU WOULD LIKE HELP?

The Children’s Chronic Arthritis Association is based at the Ground Floor

Office, Amber Gate, City Walls Road, Worcester.

Either call them on 01905 745595, e-mail info@... or visit their

website ccaa.org.uk.