'Our daughter needs her own space'

By Jane Elliott
Health reporter, BBC News

Roxanne has Arthrogryposis Multiplex Congenita (AMC)

Like any teenager, Roxanne Walker needs 'me' time away from her mother and father - time to do the things most teenagers love, like having her nails painted and listening to gossip.

'Me' time though is difficult as Roxanne has a severe medical condition, which has left nearly every joint in her body fused.

She cannot walk, talk or swallow. She cannot even sit up unaided.

But she is fully aware of what is going on around her.

She needs care 24/7, which means one of her parents is always on hand, but, as Roxanne's mother Gilly knows, no teenager wants their parents around all the time.

'Offers a break'

So the respite care given by the Children's Trust, a national charity offering long-term and respite care for children who have multiple disabilities, offers a lifeline for the family.

It allows Roxanne her freedom and her parents time to spend with their two older daughters.

"Respite care is tremendous. I have to look at it from Roxanne's point of view, which is: would you at 14 want to spend all of your time with your parents?" said Gilly, from Guildford.

Would you at 14 want to spend all of your time with your parents? Gilly Walker

"When Roxanne goes to the Children's Trust she gets a lovely change of scene. She does different activities, hydrotherapy, music therapy and aromatherapy.

"She has a bit of time to be 14.

"It's important for Roxanne to have a change of environment too."

Father Keith agrees the monthly stays of three to four days at a time also give the rest of the family, daughters Nicky, 25, and Jessica, 18, some 'me' time.

Something wrong

Gilly said that she had known during her pregnancy that there was a problem.

"When I was expecting I thought there was something wrong, but nobody would believe me.

"She did not move as much as the others. I was just not happy, but was dismissed by the medical profession."

Within an hour of birth, Roxanne was diagnosed with Arthrogryposis Multiplex Congenita (AMC), which can range in severity from affecting just one joint to the total immobility she experiences.

AMC by itself isn't life limiting but when severe, such as in Roxanne's case, it brings with it other conditions that have an impact on her life and health.

She has to be fed a special liquid feed continually for 22 hours a day via a volume controlled pump connected to a tube directly into her small intestine.

And she has already had 42 general anaesthetics for operations and procedures.

Roxanne has also had a collapsed larynx and titanium rods inserted either side of her spine as she had scoliosis (curvature of the spine) and kyphosis (abnormal rounding of the upper spine).

'Talk to the hand'

She understands everything that is said to her and has developed her own special way of communicating.

"Roxy indicates what she wants by her big smile," said Gilly.

"If she is cross she will shut her eyes and ignore you like any other teenage girl. It is very funny.

"Last night one of our daughters was saying something and Roxy would not look at her at all.

It's a chance to 're-charge' their batteries Denise Allsopp The Children's Trust

"She was just like 'talk to my hand' - you know the attitude they have."

Denise Allsopp, a deputy nurse manager at the Children's Trust, which based in Tadworth, Surrey, said respite care was vital for children like Roxy.

"These breaks also give families an opportunity to spend time with each other doing things that become difficult when their child has disabilities, such as going out in the evening, having a holiday or just catching up and having a rest.

"It's a chance to 're-charge' their batteries so that they can continue to care and support their child."