25 February, 2017

Johanna, mother to Elton and Noomi, tells a little about their family and how much it has meant to them to meet other families. Johanna is very engaged in the NOC – a Swedish organization for people with experience of living with a rare chromosome disorder.

Who are you in your family?

In our family there are me, Johanna, Andreas and our two kids, Elton and Noomi. And a cat called Quila. Elton is an extra unique guy with a rare chromosome disorder.

What do you like to do?

We like to do things together, the whole family. Elton is a boy who loves to look at different things and to follow anything going on around him. He finds many of the things going on very exciting! Noomi thinks it is very important that we do things together all the four of us. She doesn’t really like it when Elton is together with an assistant and not together with us.

We spend quite some time at the rugby field during season. Göteborg RF is our extended family where we have many friends from back in the days when both Andreas and me played rugby – something that we don’t have the time to do anymore.

Photo from Rare Chromosome Awareness week - the family wearing special colours to raise awareness and understanding of chromosome disorders.
Photo from Rare Chromosome Awareness week – we all wear special colours to raise awareness and understanding of chromosome disorders.

When was the first time you met other families to share your experiences with?

The first time we met other families handling similar situations and living lives a bit similar to ours were through the habilitation centre and its different activities. I remember how great it was to meet other parents who also had experienced different unpredictable life changes and who could relate to what I was talking about.

What have the connections with other families meant to you?

Being in touch with other families has given us a lot. I remember longing for the activities at the habilitation centre – where we had our first chance to meet other families and feel another kind of belonging in a way. This experience was enhanced even further the times we had a chance to meet another family with experience of living with a child with a rare chromosome disorder.

Right after Elton turned one, when we had received the notice that he had a chromosome disorder on chromosome 2, was the first time that we got in touch with the Swedish organization NOC – “Nätverket för ovanliga kromosomavvikelser”. I found the organization on the internet and we immediately signed up as members. It turned out that the organization arranges family gatherings every summer. Unfortunately we became members right after the summer so we had to wait another year before we could participate.

What is NOC?

NOC is a Swedish organization for families living with children of rare chromosome disorders. It offers a great opportunity for families like ours to connect with each other, and to feel a kind of belonging – even for us who are too few to have an organization “of our own” relating to the specific diagnosis. Having experience of a rare chromosome disorders is what we have in common, and even if the conditions and types of chromosome aberrations vary wildly, there is also a feeling of having a lot in common. It is a fantastic feeling to know that you are not alone!

The first time we participated in a family gathering with the NOC we felt like coming home. We met welcoming people with warmth and a great sense of humour. It gave us so much joy and energy! We have been rather active members in the organization since that experience and have participated in several family gatherings. An important part of those gatherings is also that it is a way for siblings to both see and connect with other siblings. A very important aspect as well!

Elton and Noomi
Elton and Noomi

If you want to know more about NOC you can read more at http://nocsverige.se.

You can follow us and our family on our blog https://eltons2a.wordpress.com.

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