Monday, April 21, 2014

A life indoors for toddler who is allergic to sunlight

A life indoors for toddler who is allergic to sunlight


I was passed this information on this article for those that may have a type or skin condition.  Please read about this little girl.  Please share and pass it along.  Those that may have EPP, CEP or XLP and would like information please contact the American Porphyria Foundation 866-APF-3635.


"Remember....Research is the key to your cure!"
PAINFUL CONDITION: Little Monroe Mills lives with solar urticaria and hopes a hydrotherapy bath will make life more comfortable.
PAINFUL CONDITION: Little Monroe Mills lives with solar urticaria and hopes a hydrotherapy bath will make life more comfortable.
MOST parents take for granted the ability of their children to play outside.
For young Monroe Mills of Nambucca Heads, New South Wales,  going outside in the sun ends in extreme pain and regular hospital visits.
"Monroe suffers from a rare form of eczema that is known as photo-aggravated eczema," her mother Sarah Mills said.
"This means any ultra violet exposure leaves her in pain for days.
"Monroe has battled this condition since birth.
"She has never slept a full night in her life and has spent more time in hospital in a year than most people have in their lives."
Monroe has also been diagnosed with an allergy to the sun known as solar urticaria.
The disease is rare, particularly in someone of Monroe's tender age and despite medical attempts to find permanent relief, sadly there is no cure.
For now, wet wrapping is the only therapy that keeps Monroe out of hospital for extended periods, however it's only a short-term fix and means she must wear a body stocking from head to toe every time she leaves the house.
A Miracle for Monroe fundraising campaign is underway to help Monroe's family purchase a hydrotherapy bath.
It will give Monroe a chance to shine beneath the suffering and discomfort.
Monroe Mills.

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Happy Thanksgiving 2017

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