“My daddy gave me an apple and my mummy gave me an apple, that’s why I’m a girl. I’m your mummy and I gave you an apple, your daddy gave you a banana, that’s why you are a boy. You are very special boys because I accidentally gave you an apple with a worm”.
This is how I attempted to explain Hypohidrotic Ectodermal Dysplasia to my boys on a genetic level. They asked, that was for certain. What was also evident, they wouldn’t wait to ask until they’ve studied biology. It has to be simple for 8, 6 and 4 year olds. What better pictures to use than apples and bananas.
My three boys were born with the genetic condition called hypohidrotic ectodermal dysplasia.
Hypohidrotic = too little sweating
Ectodermal = skin, hair, teeth, nails, digestive system
Dysplasia = abnormal in form
The condition is X-linked, which means, girls carry it but boys have it. Girls have two X’s, hence the apples. Boys on the other hand have an X and a Y so 1 apple and 1 banana. When we make a baby the woman hands over one of her apples, the man decides if we have a boy or a girl by either handing over an apple to make a girl or a banana to make a boy. So you fellas can’t blame the woman for the gender of your child. If you want a footy team, you are the one in charge of selection!
When a woman has a worm in one of her apples (a genetic fault) and doesn’t know about it, she can pass it to her child unawares. You can be a carrier and not know about it, the apple without the worm can mask the one with it.
That is where boys are unfortunate with HED syndrome. Having only one apple means that he has no other to support the wormy one. Try as it may, a banana is no apple.
How does hypohidrotic ectodermal dysplasia affect my boys? How do I put 8 years of knowing no other life into a short story?
It is easier to tell you why my ‘normal’ daughter seems so strange to me.
For starters, she was born with a full head of brown hair! She looked like her father, the three boys looked like the milkman.
One day I picked her up out of the capsule in the car and I couldn’t explain why she was so wet. How did she wee past her nappy? Hang on, the nappy’s dry. How did she manage that?!? She was wet all over, even her hair, how did that happen? I’m sure she didn’t have a bottle in there, it could have leaked. How come she’s so wet? Oh! Eugh! It’s a hot day, she’s sweaty! I’d never held a sweaty baby before.
More than 8 teeth in a child’s mouth is scary! She once ate a whole pear, skin and all, before she could even walk properly! Even now I have to peel, cut and core pears for the boys.
With all those crocodile tears she makes my boys look like they are faking it.
Hairy arms, hairy legs, fuzzy back. Oh she’s going to be so jealous of the boys. No shaving or waxing their legs.
The bucks’ night prank will go terribly wrong, the boys will have no eyebrows for their mates to shave off!
The bride to be will get the shock of her life when the groom enters with a set of eyebrows super-glued to his brow.
I could go on and on, as is any parent’s curse when willing eyes are reading, but I’ll save some more for next time.
My three boys won’t have body odour, their shoes won’t smell, if Matthew bites another child they’ll be treating that child for snakebite. Nathanael is celebrating 8 teeth after waiting 2 years, 1month and 7 days to join the toothy ranks with his first one, and Sebastian is one of the friendliest most talkative little men on earth.
Sure they get too hot when it’s not being monitored and Matthew and Nathanael’s skin gives them no end of trouble with the eczema. But with the right information about their special little bodies, I know that my three boys will live to a grand old age even with that worm in their apple.
with love & support