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Since Mathilda was born we grew quite familiar with hospitals and doctors. Every four months we have to check the eye pressure. For this we go to the Reine Fabiola Hospital for Children here in Brussels-Jette. It’s always a daytrip because it involves travelling to the other side of the city, waiting, experiencing belgian bureaucray (which includes more watiting) and a screaming Mathilda. The examination is on the open eye and with Mathilda getting older it is no longer possible to persuade her holding her head still so that a doctor can look into her eyes.

So this time it was extra hard. Today it took three adults ( us and one doctor) to hold her lying still on her back on a bench and an expert to measure the eye pressure with a Frankensteinish instrument. She screamed like hell. And I cried to. This is the last time we do it this way. It’s not good for Mathilda nor for us at a parent. Luckily the results were negative.

Afterwards we treated ourselves with a waffles at the hospital bistro. Needless to say it consisted of 1000% sugar. But Mathilda liked it. The orange colour is from her eye drops.

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I think it’s the easiest to start with the facts. A few weeks ago we got the long awaited results from Mathilda’s IRM. It confirmed that Mathilda has Sturge Weber. Unfortunately the doctors answers weren’t satisfied at all and there are still a lot of questions. I immediately contacted the Sturge Weber Foundation in the States and they were very helpful in providing support and information. Luckily there is an excellent experienced specialist here in Brussels’ St Luc Hospital, she is dealing with vascular abnormalities for about 20 years now. So for the first time within more than a year we found ourselves in good hands.

Just some facts about Sturge Weber: It is characterized by a congenital facial birthmark and neurological abnormalities. A red facial birthmark covers Mathilda’s right upper head. These angiomas – portwine birthmark, think Gorbatschov – create abnormal conditions for brain function in the region which means  there is a risk of seizures and convulsions. Fortunately Mathilda hasn’t had any seizures so far. Which is a good sign. Statisticly spoken. But I don’t believe in statistic anymore. They say that 1 : 30 000 is the rate to get Sturge Weber (it’s non familiar). Bingo!

So life changes. From one day to another. And I can prevent it. It didn’t ask me. Nor Mathilda. But we are lucky that Mathilda shows no signs aside from the birthmark.

So this will be the blog of a hysterical first time mother dealing with a rare disease. One by one I will add more information about Sturge Weber. And continue more frequently on our battle, challenge, adventure or what is life about.

 

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Special check at the Eurostar by Mathilda.

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