Ipswich: Parents of five-year-old craniosynostosis sufferer Louise hope to raise awareness of condition
IPSWICH: When Vicki Pyett takes her little girl out in the town she is often left upset by people’s stares or comments.
Whether she is shopping in the supermarket or meeting friends in town, the frustrated 31-year-old says she would prefer people to stop and ask her about little Louise’s condition, instead of making hurtful comments or turning away.
Following The Evening Star story on Lilly Meakings, who wears a helmet to correct the shape of her head after being diagnosed with plagiocephaly, Vicki – who lives near Lilly, in Hawthorn Drive – is keen to raise awareness of her daughter’s condition.
When five-year-old Louise was born, the younger twin to brother Harry, it was a difficult labour and the tiny 3lb 3oz baby had to be resuscitated for seven minutes.
Doctors were able to get her back and the pair went to Ipswich Hospital’s special care baby unit.
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But at five weeks old, mum Vicki and dad Antony were told the devastating news that their little girl had a rare condition called craniosynostosis, which forces the skull to develop in an abnormal shape.
The youngster underwent surgery at Great Ormond Street Hospital at just 17 months to correct her problems, but has been left with developmental problems similar to autism, a double squint and struggles with motor skills like holding a pencil.
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“It’s just one of those things,” said Vicki. “The doctors just said she was really unlucky.
“But to me, she was perfect – she was just a special little girl.
“The children that she goes to school with have been with her since she was three, so they tend to look after her, but the looks we get from other people when we’re out shopping or in town are just awful.
“People don’t notice it as much now because to all our friends, she’s just Louise, but I would prefer it if people came up and asked what’s wrong with her instead of staring or making comments.”
Louise is one of five children – nine-year-old Kimberley, Charlie, six, twin brother Harry and younger sibling Alfie, two – and has recently started at Gusford Primary School in Sheldrake Drive.
“She’s come on in leaps and bounds in the last few weeks,” added Vicki, “But we have still got a way to go. I don’t actually know anybody else who has had this or anything like it. I’d like to get in contact with other people.
“I just want to raise awareness about her condition and tell everyone that people may look a bit different, but they really aren’t any different at all.”
n Do you have a message of support to offer to Vicki and Antony? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN, or e-mail firstname.lastname@example.org.