healthmedicinet

The family home, in Kingsnorth, Kent, has been adapted with UV proof film and
safe lighting to meet his strict needs

The condition affects fewer than 100 people in Britain and around 1,000 around
the world, but he is one of the youngest to be told he has the disorder.

Mrs Miller, 36, said their lives “completely changed” after
Eddison’s diagnosis at just 13 months.

“The condition affects every aspect of his life and we have to think of
things that others would take for granted,” she said.

“People don’t understand the everyday issues we have to consider. We have
to make sure Eddison isn’t near to the door when the postman opens the
letterbox and we have had to have an AC system installed because we can’t
open any windows in our house.

“But he is just a normal little boy. He loves getting messy in his
sandpit, playing on his bike or with his little brother Raife.

“Our goal is just to help him live his life like a normal child.”

Eddison started displaying symptoms of being extremely sensitive to both
natural and artificial light at just three months old.

His eyes and skin were worst affected and he developed severe abnormal burns.

After initially assuming he was suffering from allergies, a number of hospital
visits and tests at St Thomas’s Hospital in London later revealed he had XP.

His parents said it was a common misconception that having XP simply meant
keeping out of direct sunlight.

Mrs Miller added: “UV is present during all daylight hours and danger is
still present indoors, with UV rays emitted by many sources of artificial
lighting.”

She said the family looks forward to the clocks going back.

“During the summer I calculated that Eddison and I spent less than 24
hours outside in six weeks so obviously that’s an extremely challenging time
of year,” she said.

“But the minute the clocks go back we get so much more time outside –
it’s wonderful.

“I know Eddison is going to face many challenges in his life but it is
our job as parents to make sure he gets as much out of life as possible.”

Following the diagnosis Eddison’s aunt, Rebecca Stewart from Cushnie,
Aberdeenshire set up a fundraising group called the Teddington
Trust.

Overwhelmed by the outpouring of support, the family decided they would build
on its success and try and help others with the rare disorder.

Now they have launched their own set of teddy bears and books and hope their
‘Little Ted’ products can be sent to all the estimated affected 300 children
in the world.

Mrs Miller, said: “We looked for ways to help educate Eddison in
understanding his condition, and we immediately looked for appropriate
reading that might help us find the words to explain this.

“Eddison loved the initial story I wrote, and really engaged with it so
before long I started thinking of further additions to this and a small
series of `Little Ted` stories emerged.

“We have set ourselves a goal to provide a copy free of charge to all
children within our reach around the world affected by XP.”

The book’s illustrator, Michael Howdon, said: “I feel very privileged to
be a part of the Teddington project; it’s fantastic to work on a book that
will help children across the world, it has been a very rewarding experience.”

A spokesman for Parkers Design Print, who are printing the book, added: “Receiving
the book and teddy that the Teddington Trust have so lovingly and expertly
created from scratch, could make a massive impact on the children who suffer
from XP and their supportive families.

“We feel very privileged to been a small cog in that wonderfully
energetic process.”

To donate, visit: http://www.teddingtontrust.com/