THE MARFAN   MOTHER

The journey began when the preschool hinted at a problem It seemed that she squinted a lot and that she constantly wanted to get close to see the collection. We must have reflected on this, but more thought that it was something tix or similar when she squinted plus that children are often close and look at things. We didnt think too much about it, and Freja is/was a master at puzzles and pattern-seeing and started very early on with this. 

I took this up with BVC who wrote a referral to children I think in Umeå and then on to eyes in Umeå. Once inside the examination, it took some time, they wanted to drop her eyes to do a larger examination and then it was established that she had lens dislocation in both eyes but the left eye was more slanted. The doctor started talking about a rare diagnosis Marfan syndrome that affects a very small group of people. Sitting there alone and taking this in was a shock, the eye examination which was a completely normal check became something much bigger. This became the journey we are now making in her illness...every day is a new day in my opinion and I never know what tomorrow looks like.

 

You can read more about the trip under the Blog tab.