Date Of Birth: June 5th, 2008

Illness: Hypohydrotic ectodermal dysplaysia, Tricothiodystrophy and Ichthyosis follicularis

BIOGRAPHY

Charlotte was born in June of 08 after a long and complicated pregnancy. She was born with "funny nails" and very little hair. Her daddy has the same funny nails so we didn’t think much of it.

It wasn't until October the following year I started to notice she wasn't coping with the heat that I looked into her symptoms. I was lucky enough that my husband’s childhood doctor is still practicing and he told us Charlotte’s dad was diagnosed with Ectodermal Dysplaysia when he was little but back then it was " this is what he has and good luck".

There are many types of ED but Charlotte has a type called Hypohydrotic Ectodermal Dysplaysia or HED. Basically she cannot sweat to maintain a safe body temperature. She is also currently in the process of being diagnosed with an even rarer condition called Tricothiodystrophy or TTD. This is basically being allergic to sunlight, and although the doctors are certain she has this condition we still need that bit of paper for her diagnosis.

She also has Alopecia that is part of the TTD.

Charlotte is a beautiful little girl who has two older sisters and they are all full of life. Emily, her oldest sister is also a type 1 diabetic. Sarah is our healthy child. Charlotte loves to dance, sing, play with her blocks and unfortunately she loves to be outside but she is no longer able to do this. She also cannot have synthetic fabrics on her skin as she overheats and it flares her Ichthyosis Follicularis up. (This is a skin condition that is part of her TTD where her follicles are constantly infected and she is on low doses of antibiotics continually). Charlotte is a very special Angel to us and we feel blessed to have her and her two older sisters.