Max and the tooth fairy

Max 

Unfortunately for Max, he’ll never get a visit from the tooth fairy.  He was born with a genetic disorder called ectodermal dysplasia (ED).

There are many kinds of ED but Max has hypohidrotic ectodermal dysplasia or HED.  It has left him without sweat glands, teeth and with very little hair.

ED disorders are very rare and affect around 1/100,000 babies born in the UK.  Max’s doctor had seen one previous case of ED in the last 20 years. 

There’s no history of the condition in Max’s family.  He has HED because of changes to one or more of his genes before he was born.

Because he doesn’t sweat, Max gets hot very easily and spends much of his time at home in just his underwear.  If he overheated, it could cause a seizure and sometimes these do prove fatal.

He has a special pillow which draws the heat away from his head while he’s asleep and he has fans in his room to keep him cool.  He also has to make sure he drinks a lot of water.

Max putting in his false teeth

Max has been fitted with his first set of dentures at four years old.  He doesn’t particularly like his teeth and because he doesn’t need them to eat, they don’t get worn too often!

Although he’s too young to understand why he’s different from his friends and family, he’s beginning to learn how to look after himself.