21 November, 2017

Jenny, mother of Fabian who was born with a very rare diagnosis, tells us about why they joined Our Normal and why they think social family connections are important.

Who is your family?

In our family it is me, mum Jenny, my son Fabian who is 8 years old and my husband/Fabian’s step father. Since me and Fabian’s dad separated, Fabian stays with me every second week.

What experiences got you to join Our Normal?

Fabian was born with something called Peters plus syndrome. As far as we know he is the only child in the Nordic countries born with this syndrome, and he is one of only 100 children around the world. The syndrome affects parts of development, sight and language. The severity of developmental delay, vision impairment, language disorder and learning difficulties vary a lot in every individual case.

We got the notice about Fabians syndrome almost immediately after he was born. He suddenly stopped breathing in his father’s arms and we had to go straight to neontal. There they soon realized that Fabian has Peters anomaly, which is a condition where the eye is not fully developed. That was the first step on our way to the notice about Peters plus syndrome.

Jenny with her son Fabian sitting down outside
Jenny with her son Fabian | Photo: Anders Hofgren

What do your family like to do?

Fabian used to be very interested in soccer, but now his biggest interests are Pokémon, video games and using his iPad. At home we have pets; guinea pigs and aquarium fish that we take care of together. As a family we also like to be outside and do outdoor activities together. During summer time we like to go sailing, and we also dedicate a great deal of time to go fishing.

What do you think that a digital meeting place like Our Normal can mean to families like yours?

If you find people that already have asked the same questions that as new parents are wondering, it means that families  do not have to reinvent the wheel all over again. It would have been awesome if a community had been available 8 years ago when we where new, lost parents.

Sometimes the needs we have as families are the same even though the diagnoses are different. This is the main reason for us to join Our Normal’s community; to have the opportunity to support others with similar needs like us!

It would be great if a community like this also could give families new friends to hang out with, and make us feel less lonely. In this case it is not the experience of a certain diagnosis that is important – it is the possibility to find others who also have specific experiences to share that matters. For example it would be great for us to find a family to go on a ski trip together with!

Why do you wish for more families to join Our Normal?

Since we have got the experience of a very rare syndrome, there are no family camps or societies directly addressed for us. Therefore we hope that even more families want to join the community to support each other. Regardless the experience of a child with a very rare disability or not – the needs can be very similar!

It is easy and free to create a profile at Our Normal! Your profile can only be visited by other members. Become a part of the community today to be able to find new contacts and be there for other families.

Become a part of a supportive family network!

Creating an account is quick and easy, and completely free of charge. Your profile page can only be viewed by other members. Become a part of the community in order to connect with other families, or to be there as a support for others!

Read more

Never miss out on our updates

Submit your e-mail to receive our newsletter. (We promise to only send relevant updates, and not too often! You can choose to unsubscribe anytime you like.)