Golden girl who just loves to laugh

By Colin Grant


OUR DAUGHTER is beautiful. So say Gilbert and Sylvia Watterson with pride. And she is. A lively little girl with golden hair, blue eyes and a smile which lights up her whole face. 
But time is very precious for Robyn, because she suffers from Hurler’s Disease — a fatal genetic condition.
But in her parents’ Glasgow home everything is geared to making each day a happy one. 
The living room has been turned into a huge playroom and the garden is filled with a playhouse, a chute and baskets of toys. 
Robyn would rather run than walk, she’s constantly up to mischief and full of affection — giving smiles and cuddles with gleeful abandon.
Courage
It’s very hard to accept that this wonderful little girl is dying. 
Her parents show a special brand of courage. Robyn is their only child and they won’t have another because there is a one in four chance that the baby would inherit the disease.
So they dedicate their lives to enjoying every moment with their daughter. 
“Rachel House has been a lifeline for us,” they say. “It’s a place where we can recharge our batteries and meet other parents in the same situation. 
“They understand our difficulties and the staff are always on hand to listen to our problems.
“They have helped educate us how to care for Robyn. They can’t do enough for her and the welcome she gets makes her feel very special. But we know they treat every child with the same love.”
When she was born Robyn weighed 9lbs. For the first year her development appeared normal but gradually her parents began to suspect there was something wrong.
After numerous medical tests Sylvia and Gilbert were told that 17-month-old Robyn had Hurler’s Disease, a condition which means that each day her cells are dying.
Sylvia burst into tears and was physically sick when she heard how her little girl would slowly but surely lose control of her breathing, swallowing, hearing and sight. 
The expected age limit for children who have the disease is six to 10. Robyn will be five on Saturday. 
“The thought of losing her is devastating,” says her mum. “We decided to give her the best life any little girl could have. We take her everywhere — to Alton Towers and Blackpool, to the zoo, McDonald’s and the beach. 
“We bought an old banger of a caravan and go on trips all over Britain. Robyn loves having fun and seeing other children. 
“The only problem is kids stare at her because she looks ‘different’. It’s heartbreaking, but I’m determined not to hide her away. In the past Hurler’s disease was known as ‘gargoylism’.
“We want to encourage people to accept Robyn and her handicaps, because to us the loveliness of her nature is all that we see.”
Last week Robyn started Broomlee School and her mum is so proud of her in her smart uniform. “It’s a moment we never thought we would see,” she explains. “In this situation you learn not to take anything for granted.”
As I talked to her mum and dad, Robyn came close to me and tugged at my hand. “Play” she demanded. When Robyn wants something she gets it and she’s a girl you just can’t say no to.
We went into the garden and she showed me her toys. Robyn runs like the wind and I had trouble catching up with her. Then we went back into the house where a cartoon video was playing.
I sat down on the floor and she cuddled up close. She’s a very loving, trusting wee girl. We held hands and watched the TV for about five minutes, then she was up and on the go again. There’s never a dull moment when Robyn is around.
Only six other children in Scotland suffer from the condition.
Gilbert and Sylvia took Robyn to Rachel House for the first time in May 1998. They were feeling particularly raw and vulnerable as they tried to come to terms with the shocking diagnosis.
“We’d built a brick wall around ourselves in an attempt to hold in our pain,” explains Gilbert. 
“But brick by brick that wall came down as we responded to the love shown to us by staff and volunteers.
“Looking after Robyn at home is a round-the-clock job and sometimes Sylvia and I get physically and emotionally exhausted.“Do you know what a visit to Rachel House means to me? It’s about being able to drink a cup of tea before it’s gone cold. It’s getting an undisturbed night’s sleep. Having time to talk together. Not having to do piles of washing. It’s the only respite we get.
Ray of sunshine
“But more importantly it adds so much to Robyn’s enjoyment and experience of life. She loves the bubbles in the Jacuzzi. She paints and plays and laughs all day when she’s there.
Gilbert and Sylvia are an amazing couple. They live with the knowledge that time is very short for them as a family so they make every moment count.
At Rachel House, Robyn is like a ray of sunshine. Darting about among the other children, touching their faces, smiling and urging them to play with her.
It’s a place which has taken this little five-year-old to its heart, so much so that Robyn was chosen to front the appeal for the second hospice. 
“Our happiest day will be when Robyn cuts the tape for the new hospice at Loch Lomond,” says Gilbert. “Please help us make it happen.”

You can e-mail us at: hospice@sundaypost.com