Our family profile is from Helen, who is still awaiting diagnosis of her
children’s condition:
My name is Helen and I live in Cheshire, I am a single mum to Chelsea, 9,
Stephanie 2 and Daniel 1. My younger two children both suffer from light
intolerance and in the process of investigations. When Chelsea was 6, I met my
partner at the local gym,. I became pregnant about a year later with Stephanie.
After a long pregnancy and probably too many doughnuts, I gave birth to a
beautiful baby girl weighing a whipping 10lb 3ozs! Everything seemed well for
the first few months.
When Stephanie was 12 weeks old we went on holiday to Tenerife. After two
days her eyes became infected and despite antibiotics her eyes were completely
closed and swollen for a week. She suffered 7 of these eye infections in 8
months. The doctors said she had a blocked tear duct!
During that first summer I noticed her exposed skin becoming red even though
she was always under a sun canopy and in the shade. We bought a pair of
sunglasses which seemed to protect her for a while, but then the skin on her
face began to burn also the lower part of her arms which had been exposed. As
winter crept in things became a little easier.
I gave birth to Daniel in December, thankfully he was a little smaller at 8lb
5ozs. Spring arrived, along with bright days and the summer sun. A time that
many people wish for. For the early part of that year (2000), Stephanie would be
in her paddling pool with a UV body suit, factor 60, sunglasses, hat, under a
parasol and in the shade! She could tolerate 2—30 minutes before her skin
would become red and we would come back indoors. It was one of those days that
Daniel burnt. He was asleep in his chair, 6 feet away from the patio doors, the
garden was all in shade. After 20 minutes, I noticed his face bright red. I
thought he must be too hot, even though he only wore a cotton T-Shirt and a
nappy. That night when I removed his T-Shirt he had a large red V on his chest
where his arms had been. All his face and chest was blistered and peeling. It
was the I realized something wasn’t right with my babies.
Ironically I saw the article about 2 children in Liverpool who had XP. After
a call to the television studio, they put me in touch with the XP Support Group.
Shortly after that I received the special visor material*. I couldn’t wait to
take the children out. Our first trop was to Toys R Us. We walked through the
doors into the lights and headed towards the outdoor equipment. After 5 minutes
Stephanie began screaming. I looked at her face under the visor. Her eyes were
swollen and all her skin was red raw. We drove home with Stephanie screaming the
whole way. We bathed her skin with ice water. Her cheek was blistered. From
there we went to see a photo-biologist at Hope Hospital who sent my children for
biopsies. We now have to sit and wait. We spent the rest of that summer behind
curtains.
We are now in January and things have deteriorated a lot in the last few
months. Stephanie burns with UV and visible light. Even a 40 watt light bulb
burns her little face. We spend our days behind blacked out glass with only a
10watt light bulb, the television is dimmed very low. If I go to the shops the
children travel in a blacked out buggy, which gets very hot and stuffy
underneath.
We have raised enough money to buy the space-suits from the HED Foundation in
the USA. Stephanie still has the burns on her face and chins, 5 months after the
event, despite course of steroid and hydrocortisone creams. Thankfully Daniel’s
skin will not be as sensitised as Stephanie’s as he went into the dark at a
younger age.
I have to deal with the ignorance of people in the Health service who have
said that because they haven’t seen the children burn, then they found it hard
to believe what was happening!!! When are these people, who are supposed to work
in a caring profession, begin to start listening? Just because they haven’t
dealt with it before, doesn’t mean it doesn’t exist! I now have a fantastic
occupational therapist called Lorraine who helps with the support that we need
as a family.
Even though Stephanie and Daniel suffer with the illness, it affects Chelsea
too. She ahs lived in a light world for eight years and now has to live in the
dark.
I don’t know what is around the corner for us or what the future holds, but
when I wake in the morning to these three smiling happy faces it makes life a
little easier.
"Chelsea, Stephanie and Daniel, you are my three special stars who shine
bight enough to light the dark skies"
* The protective film blocks out UV, but if someone is sensitive to
visible light as well, it cannot on its own , give sufficient protection.
