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A PLACE OF COMFORT; HOSPICE EASES PAIN OF FAMILY'S CRUEL DOUBLE BLOW.

Byline: Laura Coventry

THIS summer, the Hollern family had two fifth birthdays to mark - that of their terminally ill daughter and of the children's hospice where she is cared for.

Rosie's older brother, Robbie, died at the same hospice. He had a rare neurological condition called infantile Batten's disease and was among the first children to be looked after at Robin House in Balloch, Dunbartonshire.

Brave Rosie is battling the same condition.

The five-year-old was diagnosed when she was just six months old.

It took doctors much longer to find out Robbie had the fatal, inherited disorder of the nervous system, also known as Spielmeyer-Vogt-Sjogren-Batten disease.

Robbie lost his speech and sight, and was having up to 50 seizures a day, before he was diagnosed when three years old. Rosie was born just a few weeks later.

Because of her neurological condition and the associated disabilities, Rosie did not learn to sit up, crawl, walk or speak.

Mum Anne, 40, admits the grieving process begins as soon as you discover your child is terminally ill.

She said: "It's unfortunate that Robbie had to get so bad before alarm bells started ringing.

"At the time, doctors in Yorkhill had only seen one other case of infantile Batten's disease.

"I think it's awful that it happened to me twice in a row. I didn't believe life could be so cruel.

"When Rosie was diagnosed at Yorkhill, I screamed the place down. We just came home, shut the blinds and locked ourselves away for a few days.

"Having been through it all with Robbie, we knew what she was about to go through.

"We weren't going to have any more children. After bringing two children into the world with a death sentence we were too frightened to try again.

"After Robbie passed away, we changed our minds. I didn't want it just to be the two of us for the rest of our lives. We thought we'd give it a go.

"That was in August 2008 and by the October I was pregnant.

"At 10-and-a-half weeks I was tested for IBD. A week later I got my results. She was OK."

Anne and Mark, her electrician husband of 12 years, named their baby daughter Roxie.

Sadly Robbie, who benefited from end-of-life care at Robin House, never got to meet his new sister.

His death in January 2008 affected a lot of people - 500 mourners turned out to pay their respects at his funeral service.

Anne, who gave up her job at a petrol station to spend more time with her son, said: "We always knew that Robbie was going to pass away but it was a lot sooner than we thought.

"It was quite sudden and quick. He was only six-and-a-half.

"I had a figure in my head that he would live until he was eight, so I wasn't expecting it."

Now the family are bracing themselves for the heartache of Rosie's inevitable death.

It's been a big year for her. Not only has she turned five, but she has also started school.

The sad truth, though, is that children with infantile Batten's disease rarely live beyond the age of nine.

Anne, now a full-time mum, said: "The fact that she's turned five is horrible, because I don't want her to get older.

"I just hope and pray we have her for another year-and-a-half or longer.

"We take it one day at a time with Rosie. She's been in and out of hospital more than Robbie ever was.

"You have to do everything for her - but she gives us the biggest smiles."

Anne added: "Roxie will keep us going when we lose Rosie - just as Rosie kept us going when we lost Robbie. Thank goodness we changed our minds about having a third child."

Now 15 months old, Roxie is developing like any other toddler.

And, although they've been parents twice before, it's a new experience for Anne and Mark.

Anne explained: "Rosie never did anything, she never crawled, walked or said words like Robbie did. Meanwhile Roxie has been talking since she was 10 or 11 months.

"She repeats everything. She's really clever. She's started feeding herself and, while she's not walking yet, she's almost there.

"I think she is aware of Rosie's situation. She's really gentle with her and she gives her a cuddle. It's lovely to see.

"They are totally different but I'd say Rosie is happy in her wee world."

THERE'S no chance Roxie will grow up without knowing about the older brother she never met.

The walls of the lounge in the Hollern home are adorned with professional portraits of Robbie, and his two sisters.

Anne added: "I talk to her about her brother every day. I point to his photographs.

"One day when she is old enough, I will take her to see the headstone with his picture on it."

Anne recalls walking past Robin House with Robbie while it was being built near their home.

She didn't know at the time that her son was battling a lifethreatening condition. Little did she know that she would soon be needing the hospice's services for two of her three children.

Anne said: "When Robin House was completed, we visited it. It was brilliant.

"I've been going since it opened and I have never looked back. I have so many fond memories of Robbie with Rosie at Robin House.

"In fact, when I go to Robin House, I tend to forget my way out. I feel like part of the bricks up there."

Anne feels so comfortable with the hospice, she has comfortable with the hospice, she has even requested that when Rosie's time comes she is put in the same room Robbie was in.

She hopes her daughter's time there will be as peaceful as her son's was.

Being at the hospice makes the couple feel close to Robbie and, if things get too much for them, they know they can visit the quiet room.

That's where the memory book lies. It is filled with page after page of family tributes to the hospice's lost children.

There's a page dedicated to Robbie, and in time there will be one for Rosie.

Anne revealed: "I think about losing her all the time. I have already got ideas and songs for her funeral in my head.

"I think you have to try to prepare yourself."

Given that the hospice has a special place in Anne and Mark's hearts, the family have raised thousands of pounds for CHAS.

The charity provide the only hospice services in Scotland for children and young people with life-shortening illnesses.

At Robbie's funeral, donations to CHAS topped pounds 3500. Anne boosted their funds by a further pounds 925 this year by asking for donations instead of presents for her 40th birthday.

In September, the family joined others who have lost loved ones at Robin House's fifth birthday celebrations.

And the couple are ever so grateful to hospice staff for their continued support.

Anne said: "I can't even think of words to praise them enough for everything they have done for us and for everything they will continue to do for us."

For information about CHAS, visit www.chas.org.uk visit www.chas.org.uk

CAPTION(S):

SO SAD: Mark with little Rosie and, inset, his and Anne's late son Robbie BRAVE: Anne with little Roxie, the girl they were scared to have
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Title Annotation:Features
Publication:Daily Record (Glasgow, Scotland)
Date:Nov 1, 2010
Words:1237
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