It wasn’t long before we were aware that Heather had a problem with her hair, or I should say the lack of. In her former years we visited numerous consultants and specialists. One day in particular was memorable, Heather along with a number of other Children visited a local hospital, where there were numerous Doctors, each specialising in various conditions. Each child took turns with each specialist in turn, each specialist examining for their particular speciality, it was very surreal, like a grotesque version of musical chairs.
We continued to contact numerous specialists from as far afield as New York. Eventually Heather was diagnosed (if thats the right word) with Ectodermal Dysplasia (ED). ED has numerous symptoms, each child being different, with a various array of symptoms, and degrees. Other than the sparse hair, which is one of the main factors visible, other symptoms are, wide set eyes, deformation of tear ducts, poor nail growth, poor teeth, impaired mental ability. Some Children have all the symptoms others have two or three. Heather had problems with her eyes been slightly wider than the majority of the population, and her ear ducts were malformed, which meant she required operations when she was under two to by pass them.
Before Heather was old enough to be operated on, her eyes produced what I can only describe as “snot” (sorry, I cant think of a better word, but it is very accurate). We had to constantly rub her tear ducts to free the gunk, her eyes were constantly full. There was one incident I can remember like yesterday. We were on a family trip, Julie went to the toilet and I was holding Heather. This woman came over to me and berated me for allowing Heather to be in such a state, and “it” shouldn’t be allowed to be seen by others, she then scuttled off. Oh how I wish I had given her a mouthful but honestly I was mortified and couldn’t think of a response quick enough.
Anyway I digress, Heather had operations to free her tear ducts. Other than not been able to produce tears, she has been fine in this respect ever since.
We had one very stressful day when Heather was about four, waiting on x-rays on her head. There was a real possibility that her cranium would not knit together properly. If this had been the case she would have required emergency cranial surgery. Thankfully she was OK, and it was about this time we realised her mental ability had not been affected – she was insistent on the radiographer show her the x-ray and she wanted to know exactly what she was seeing, even at that age Heather was what can be best described as assertive…okay, bossy.
In the early years Heather wore a wig – oh whilst I’m on my high horse. Please can someone design small children’s wigs so they don’t resemble an oversized floor mop. Anyway she soon realised that she could use her condition to her advantage. Whilst in Disney, she quickly realised if she took her hair off she could get the instant attention of the characters! she spent all day collecting signatures bypassing the queues.
Yes heather has had problems at school, throwing her wig on the school roof been one. But on the whole she has had very few problems at school, she has a superb supportive set of friends. As she has grown and developed I can honestly say, I rarely give her hair any thought, not because I don’t care, far from it. Its just Heather has embraced her problems and turned them not to an advantage, but part of her unique character that makes me so proud.
To finish my ramblings I will leave you with a sentence Heather said to me a couple of years ago, that made me so proud, but with more than a tear in my eyes. “Dad, I’m kind of glad I don’t have much hair, its made me, me”