IN an effort to bring “the outside world to her” Charlotte Reid’s parents want to create a night garden for their daughter.
Subscribe now for unlimited access.
or signup to continue reading
Charlotte has a rare disease that causes the three-year-old to be allergic to sunlight.
Charlotte is one of only 34 people in Australia, and 500 in the world, with the disease, trichothiodystrophy.
She also has ectodermal dysplasia, which affects the development of her skin, hair, nails, teeth, and sweat glands.
Charlotte’s mother Sunny Reid said she and husband David wanted to give their daughter the best life they could.
“She can’t have any exposure to UV light so inside we have to have all our windows covered. We’re looking at getting tinted windows and roller shutters,” Mrs Reid said.
“We want to make her a sensory garden and we’ll take her out at night.”
To get Charlotte used to life outdoors, Mrs Reid recently collected a bag of leaves and sticks and will slowly introduce them to the little girl before the garden is built.
“Sometimes the girls [sisters Sarah and Emily] catch butterflies and let them go in the house so Charlotte can see them,” she said.
“When it gets cooler we’ll do a trip to Dubbo Zoo, and Charlotte won’t have to get out of the car.
“The hard thing is trying to find things to keep her busy, she gets bored quickly.”
The family recently bought Charlotte a dog, which keeps her company and provides stimulation.
Mrs Reid hopes informing the community about their daughter’s disease will stop the strange looks and comments they sometimes get when they take her out.
Even carrying her to the car from the house requires her being wrapped up and shielded from the sun light.
“I’ve had her down the street in a special UV pram and people have asked why I’ve got her covered up,” she said.
“I get sick of telling our story five million times.”
For more information about Charlotte’s conditions visit www.friendsofsammyjoe.org or www.ozed.org.au.
