2 Important events before Nick's story begins:
We've lost our first son Lenn at 8 months pregnancy by a car accident.
Our next son Brent (9 years now) has fallen at home while he was playing and had been in a coma for a few hours (he was 4).

Everything turned out well without any brain damage.

A few weeks later we went with Nick (born 21-3-1998) to the doctor because he didn't make any progression anymore with walking (he was 18 months) He still needed one finger and had balance problems.

A few months later he could only crawl around and stood at the table with overstretched knees, holding on very well.
But...always laughing and happy! Of course he wanted to play with his brother: playing football, hide themselves for each other.  Then we helped him playing and in stead of watching TV at the evening, we played games and were also crawling around!
That sweet face could always persuade us and the other family members.  His talking was minimal (he just learned to call our names), crawling became difficult and sometimes he fell with his nose to the ground.
2 times a day he stood in a special apparatus with support on his back and knees, which he enjoyed for almost 1 hour. There he learned to make balloon pictures!
When he was 2,5 we got the diagnosis from the neurologist in Antwerp: late infantile MLD.
We already knew it was a degenerative disease,  the neurologist said us to be prepared on a few hard years. Indeed, the following months, years were terrible: I stopped working (as a nurse), we had still a lot of questions, we were fighting against depressive periods.
It was very painful to see Nick so happy and knowing at the same time what he was missing!  We tried everything: went to an alternative doctor for a year (without results), physio with BOBATH-therapy.. In a few weeks of time, Nick couldn't talk anymore, couldn't take anything in his hands anymore and couldn't hold his head right up anymore. So we tried to enjoy the good and happy moments with our two sons. I think our love for both of them kept us going on! When Nick was 4, he got a G-tube, but he still kept on vomiting. Almost 6 months later he got a G I tube (24/24 hours feeding) which was a solution for him. At least he keeps his feed inside now and he has a normal weight for a kid with his age! His situation now: his breathing is more difficult, we have to use a sucking machine several times a day and mostly he lies on his side so that his tongue won't block his airway. He's totally independent now, can't move any part of his body consciously. Thanks goodness, he hasn't any contractions (yet): his muscles stay quiet supple. He gets 2-3 times a week a gentle massage.
Now and then he shows some epileptic signs, I just hope he stays free of pain.  When the weather is permitting, we go out for a walk with his special baby-jogger: he always liked that! So we go on with ups and downs, day by day, happy to have our children but regretting Nick is missing so much (We think his sight is also lost). But our family, our friends, the MLD org are all a great support to us. We learned at least one thing :LIFE IS SO FRAGILE!! so we have to live it today, not yesterday (do keep the beautiful memories!), not tomorrow!  CARPE DIEM! i know there will be ever a happy moment in my life: when they can cure people with MLD! Thanks for reading Nick's story!
Renild