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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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Studying hard in the morning

Cab driving at it's best

Cab driving at it’s best

Sir John Soanes Museum

Sir John Soanes Museum

Sir John Soanes Museum

Sir John Soanes Museum

 Freddie Forever!

Freddie Forever!

At last: Liberty

At last: Liberty

The wooden floors

The wooden floors

The flower stand

The flower stand

Lunch at Dean St

Lunch at Dean St

Fish&Chips at Townhouse

Fish&Chips at Townhouse

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Overwhelming selection

Overwhelming selection

Overwhelming selection II

Overwhelming selection II

Dinner at Fifteen

Dinner at Fifteen

Sunday strolls at Islington

Sunday strolls at Islington

Islington

Islington

Sunday strolls at Islington

Sunday strolls at Islington

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Smug

Smug

Smug

Smug

Charles Lamb Pub

Charles Lamb Pub

Good night London

Good night London

Persephone Books : Lambs Conduit, Bloomsbury (we were early but it opened on saturdays only at 12, so we were forced to try the porridge at Tutti’s, not a bad choice at all)

Liberty : Regents Street

Charles Lamb Pub : Elia Street, Islington (actually we wanted to go to the Duke of Cambrigde, an organic Pub but could remember the name, so we went here, a very cosy neighborhood pub with delicious food)

Fifteen :  Westland Place, Clerkenwell

Bamboola Baby

Veronika Bamfield. Doula. Childbirth Education. Natural Birth. Baby. Pregnancy. Breastfeeding. Babywearing. Nursery Design. Jersey City. Hoboken. Hudson County. New Jersey. Everything about babies ... naturally.

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