We are constantly in touch with the community, thanks to social media we are in touch with the whole world. That's how we got to know Tina. A young mother from Denmark who has a son with achondroplasia. Her first thought after commentaries from doctors like " Something's wrong!" Or "The limbs seem to be shortened" was "They must be crazy" Frej was born with achondroplasia. Tina tells us about her own experiences from diagnosis to everyday life. It's amazing to be part of people’s stories with AUF AUGENHOEHE. Fashion is an essential factor in our society and should be accessible for everyone without any problems. With no further ado lets hear what Tina and Frej experienced.
The first three things that people notice about Frej is his long eyelashes, his “rolls” and that he speaks a lot(!) Only a small handful has noticed that he is smaller than your average 2year old. Frej has Achondroplasia which is the most common form of dwarfism. We did not know this until after 3 weeks of his birth. Everything during the pregnancy was normal, easy and the birth just the same. So, when a doctor looked at him when he was just a few hours old and thought his limbs looked a bit short, I thought he was crazy, what was he talking about? My baby boy was (and still is) absolutely perfect. The diagnosis was like a bomb exploding – it wasn’t the fact that he had a disability, but all the worries I had never thought of before came like a tsunami. How tall would he get? Would he have complications? Will he be able to open a door? Will he be able to go to the bathroom and pull his pants down by him-self? Will he ever have friends or a girl/boyfriend? The questions went on and on – and still do.
»The last thing I thought of was clothes. Such a simple, mundane thing, really, that most new parents take for granted.«
The last thing I thought of was clothes. Such a simple, mundane thing, really, that most new parents take for granted. Shopping for the new baby had been a treat, but now I wasn’t sure what would fit him and for how long. The problem is the proportions because Frej has an (almost) average sized torso, shorter limbs, a bigger head and he is a bit stouter rather than lean, like most average size children. There is a lot to think about when shopping for him – and that is just for right now, when he doesn’t even have an opinion about what he wears. I dread the day that he wants something specific with Paw Patrol or whatever, and he can’t because it doesn’t fit his body type. A lot of his clothes has to be fitted by a tailor. I didn’t think it would bother me, but it is actually kind of a let-down, a symbol of his difference, that I can’t always go out, buy him something and he can wear it the next day… it takes a couple of weeks and more planning ahead. And to buy shoes is a nightmare of its own.
In the early days after the diagnosis I took to Instagram to try and find others in the same situation as us. Most of all, I needed to see what life would be like with, and for, a child with achondroplasia, I needed some visual reassuring. This is also how I discovered AUF AUGENHOEHE Design. Unfortunately, they don’t (yet) make clothes for children, but it was so empowering to see the models, read their stories and to see my son represented on Social Media. It brought me a bit of hope for the future and I can’t wait for Frej to get big enough to show him and to buy him his first, perfectly fitted shirt or pants.