True stories

Joris from the Netherlands

 

Joris was born 10-12-2004 in The Netherlands and has a twin brother. When he was born, Tyrosinemia wasn’t in the heel screening test for babes.

In those early days, Joris got sicker and sicker.  In the local hospital, they thought we were too over-anxious.  But after 3 months, Joris started to purge blood, and was lucky to be hospitalised in the University Medical Hospital in Groningen.  After 3 days, the diagnosis was there and the treatment could start.  These would be exciting weeks if Joris reacted positively on the treatment.  We experienced our world being turned upside down. Living a normal life wasn’t possible anymore.

We also thought that our dream, living in Africa, wasn’t possible anymore. But step by step, we dared to travel with the twin further and further.  First, we crossed the border to Germany, followed by Denmark and later flying to the Canaries

The first years were hard: he stopped eating, starting with a tube in his nose. We had to make the really hard decision – no/yes to a stomach tube, and we tried all kind of tricks to get the supplements in and filling Joris’ stomach, without an overdose of protein. 

A visit to Tanzania (for his father’s work) changed our lives!  Since then, we started thinking in possibilities and not about restrictions!

At the moment, our family have been living in Africa since 2009 (first Mozambique, now Zambia).  

Every 3 months, Joris and I travel to The Netherlands for medical checks.  On the way back, we bring medicines for 3 months: the supplements, low protein wheat, pasta, snacks and chocolate.  It’s quite a big operation to plan, but it’s do-able! 

We realize that this life in Africa is only possible because of Joris’s good condition.  Joris is a very happy boy and enjoys his life as a teenager – he goes on school trips and is part of the School Swim Team!

So our dreams came true despite Tyrosinemia! It’s not an easy journey but it is worth all the effort!

Annelies
Mum of Joris

 

 

It's hard to believe, but there are no
european guidelines for Tyrosinemia type 1 yet!

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