Brave Caitlin is an inspiration to us all

Oct 18 2008 by Zoe Chamberlain, Sunday Mercury

LITTLE Caitlin Powell runs around the room, chasing her much loved older sister Chloe and scattering toys and books everywhere.

Her lively behaviour, although hyperactive, seems typical of most three year-olds.

Yet Caitlin suffers from Sanfilippo Syndrome, a fatal disease which will gradually destroy her tiny body.

In time she will need a wheelchair then ultimately it will put her in a coma.

Doctors have said it is unlikely Caitlin will live past the age of 14.

But the family fear the end may come even quicker.

Her mum Emma, 30, from West Heath, Birmingham, said: “From the moment Caitlin was born she was very different to Chloe.

“She developed meningitis at six weeks and was given a 50/50 chance of survival.

“She pulled through, but weeks later she had fluid on the brain. The doctors said it was a virus but they didn’t really know what was wrong.

“She was a miserable baby and she was always in and out of hospital. If she got a cold, it would turn into bronchitis.

“It was obvious to us she had brain problems.”

Finally, in March this year, after lots of tests, it was confirmed that Caitlin had Sanfilippo syndrome.

It had already led to brain damage, an enlarged liver and problems in her abdomen.

“Her condition means she cannot speak, she just babbles,” says Emma, who is married to admin worker Ben.

“She has no empathy, no sense of others, no social skills. I’ve tried really hard to teach her to say odd words and she does manage some, like mamma and dadda.

“But the speech therapists say it’s important not to push her too hard.

“She’ll lose those words in time anyway.

“I’ve worked hard to potty train her but the specialists have said it’s unlikely she’ll ever be out of nappies, especially as she has constant diarrhoea.

“The only medication available is sedation but we don’t want to use that, but there is no cure. Even if a cure was found now it would be too late for Caitlin because the damage is already done.”

As Caitlin’s illness progresses, she will have to be fed by a tube and become wheelchair bound.

It is feared she will be bedridden in a coma state for the last two years of her life before one of her vital organs finally gives way.

“We’ve asked the doctor ‘does she know?’ He says no and I really hope she doesn’t,” says Emma, who has left a job she loved in banking to care for Caitlin. “She does suffer with abdominal pain, headaches and aching joints. Her joints will eventually stiffen so she walks rigidly. Eventually she won’t be able to walk at all.

“She is already starting to fall over more.

“The fact she can’t tell us what she’s experiencing makes it all the worse.”

Day to day life with a child with Sanfilippo syndrome is difficult as they are prone to bouts of hyperactivity.

Emma says: “It does get frustrating. She can sometimes become violent, but then can also be very clinging. We’re used to it. Caitlin is Caitlin to us. It’s not like she was hit by a bus and this happened. She’s always been this way.

“At the same time, she’s very loving and cuddly. She really knows who we are and it’s sad to think one day she won’t even recognise us.

“I do worry about Chloe. She’s very aware her sister is sick and helps her all the time. She has to do her homework at her nan’s because Caitlin will just rip it up.

“They share a room. And Chloe’s at the age now where she has nice things but sadly they all get broken.

“We nickname Caitlin ‘Taz’, like the Tasmanian Devil, because she spins around the room, wrecking everything.”

Chloe, eight, constantly tries to play and guide Caitlin as any big sister would.

She shows endless patience as the little girl races round and round her, sometimes lashing out and continually demanding attention.

The Powells are moving into a rented house with wider stairs and enough bedrooms for the girls to have one each.

Living on just Ben’s income has made it difficult to pay for their home.

The future is a tough prospect for the Powells.

Emma says: “Half of me thinks I can’t wait to get it over with, which is horrible.

“But it also makes us make the most of the time we have got. We want lots of lovely memories of Caitlin.

“I’m dreading the time when she’s in a coma state and unable to do anything, unable to know who we are because she does love us so much.

“She says ‘loo-loo’ meaning ‘love you.’

“She loves dancing and singing. She’s started special school and seems to be enjoying it.

“She’s not deteriorating at the moment but she’s not getting any better. Her looks are changing, her forehead is getting bigger as a result of the syndrome.

“We take each day as it comes.”

Friends and work colleagues raised money for the family to go to Disney World recently as part of their quest to fulfil Caitlin’s dreams.

Ben, 31, says: “We had a fantastic time in Disney World. It really brought Caitlin on. She loved all the characters and there was something there for each of us.

“We’re having more good times than bad at the moment. Every so often she does something that’s amazing. Sometimes she’ll hug and kiss me for no reason.

“We like to go out as a family as much as possible, taking day trips to Bewdley or to theme parks.

“She’ll keep going to school as long as possible. There’s an older girl who catches her bus who has the same syndrome. She’s 12, is wheelchair bound and is in a really bad way. It’s heartbreaking to see.

“Caitlin has great energy and imagination, but her dreams of dancing and dressing up in party dresses are slowly slipping away.

“Some day she will be confined to a bed and her world and dreams forgotten.”

We have decided to make Caitlin a Sunday Mercury WonderKid.

Our WonderKids awards honour children of courage and are supported by Legal & General.

WonderKids are given a cheque, a medal, a framed copy of their story.

They and their families will also be invited to a family fun day at Drayton Manor Park next summer.

Garry Skelton, marketing director at Legal & General’s general insurance business based in Birmingham, says: “It’s wonderful that Caitlin’s family are trying to create so many lovely memories of their time together, and we hope that our party at Drayton Manor Theme Park next summer will be another great day for them.”

l For more information, visit www.caitlinsdream.com