A light at the end of the tunnel for little Louise
IPSWICH: They are two families united by the same rare condition.
When The Evening Star featured the story of five-year-old Louise Pyett – diagnosed at just five weeks old with a rare condition called craniosynostosis, which forces the skull to develop in an abnormal shape – her mum Vicki was keen to meet others who had gone through the same thing.
And the story was all-too-familiar for 46-year-old mum Stef Walker, whose daughter Laura, now 14, has also suffered from the condition throughout her life, leaving her hearing impaired and suffering from breathing difficulties.
But as Laura and her family met the Pyetts for the first time at their Hawthorn Drive home, they began to realise that the condition need not stop little Louise, who has just started at Gusford Primary School, from doing everything her friends can do.
Mrs Walker, who lives in Needham Market, explained: “I thought it would be nice to get in touch.
“I was so scared when Laura was diagnosed because I didn’t know what was in store. They told me there would be some sort of learning difficulties.
“I would have been grateful just for some information when Laura was younger. My mum was a nurse and even she had no idea what the condition involved.
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“When she was tiny, I just wondered what I would have to look forward to – but things have got so much better as she’s got older. She’s just grown into who she is.”
Laura, a pupil at Stowmarket High School, is a keen member of the army cadets and has flown in an Apache helicopter at Wattisham airfield.
She also enjoys the same activities as her friends and 13-year-old sister Emma, including horse riding and other sports.
“I like to do all those things because they make me feel like I’m strong,” said Laura. “I like to know that I can do it just like the others can.
“I have had a bit of bullying at times, but sometimes I just turn off my hearing aids and ignore them.”
Laura also had a few words of advice for Mrs Pyett, saying she should make sure Louise is fully aware of her condition as she grows up, and is included in decisions about her treatment.
Mrs Pyett 32, said: “I was really excited that Stef got in touch because you just don’t hear of many people with cranio.
“We weren’t put in touch with any families at the time she was diagnosed. It’s nice to see that there’s light at the end of the tunnel and that hopefully, she will grow into a well rounded child like Laura, who just gets on with it.”
n Do you have any words of support for Louise and Laura? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN, or e-mail firstname.lastname@example.org.