Gwenda lives in Surrey with daughter Grace (10).
Like any typical ten-year-old, Grace loves Barbie dolls and
listening to ‘MaMa Mia’. She also enjoys nothing more than a good
giggle. “She has a fantastic sense of slapstick humour,” says her mum
Gwenda. “If you fall over in front of her, she thinks it’s
hilarious.”
‘Amazing Grace’, as friends and family call her, has Rett syndrome, a
rare neurological genetic disorder affecting mainly females,
characterised by normal development to between 6 and 18 months, followed
by loss of acquired speech and hand skills.
“I waited for years to have a child, and, after a couple of
miscarriages, I remember thinking, ‘I’ll probably never have children
now,’ says Gwenda. But at the age of 42, Gwenda was thrilled to
discover she was pregnant again.
Prenatal tests came back clear and the pregnancy was completely
normal. “Grace was born in December 2000 and I couldn’t believe I was
the mother of such a lovely baby girl,” says Gwenda. As the months went
by, Gwenda enjoyed being a new mum and was delighted to see Grace
achieving all the expected developmental milestones. “In fact, she was
the first baby in my postnatal mums’ group to reach them,” she says.
But when Grace was 17-months-old, things began to change. “She
started to scream constantly every time she was moved, whether she was
in the car or in her buggy.” Over time, she started to get more
withdrawn and it was even suggested at the age of three that she might
be autistic. Just before she was four, Grace lost hand function. “One of
her favourite things was to turn the pages of a catalogue, looking at
all the toys, but within days that changed,” says Gwenda.
Unlike other children of her age, she didn’t learn to crawl, roll
over, walk unaided or talk. Finally, when Grace was 4 ¼, Gwenda took her
to Great Ormond Street Hospital where a panel of experts diagnosed Rett
Syndrome. “It was a bolt from the blue, but at least we had an
answer,” she says. Although there are a number of skills Grace hasn’t
acquired like able-bodied children, she has learned to feed herself, as
well as walking with a frame. And just three years ago, she started to
walk unaided. “It happened a month before my 50th birthday,” says
Gwenda. “It was the best present I could have had! She really is
‘Amazing Grace’.”
Gwenda and Grace have enjoyed attending Rett UK’s family support
regional days, which Jeans for Genes have given money to fund. Being
able to share experiences at these events gives families a sense of
belonging and reduces feelings of isolation. “It’s like being part of a
big family,” says Gwenda.