Archive for 9 August 2009
9 August 2009
It’s been more than one week and a half since we made it to the front page of a Dutch national newspaper. The paper wrote a really good story and it made a real impact, as we got many, many reactions from all over the Netherlands. Very nice that the orphan diseases (and Batten disease in particular) got some good media exposure. Of course, we also received many donations varying from 5 to a 1,000 euros each. Furthermore, we did two fundraising events in Chicago; a photo shoot event and a wine tasting event. Both had a good turn out and worked out really well for us.
In the meantime, we have now raised well over $500,000 with our actions and all the generous donations that we are continuing to receive.
Last week, we tried to give Jasper Omega3 fish oil which is supposed to be very healthy for the brain. Because of the bad taste of this stuff, there was a sugar coating around the tablet. It turned out to be a mistake! Jasper, who hasn’t had any refined sugar since January, responded the same day with a pretty big seizure and another one the next day.….Fortunately, it was business as usual after that, and we learned again that sugar is the kiss of death with regards to Jasper’s seizure control. The walking is still difficult (despite the night braces he wears). In spite of this, we have some doubt about the Botox (that was recommended to us to help with this) after reading some articles about it. We will discuss this with the rehabilitation doctor before we proceed.
Next week Jasper will start having physical therapy every day. We will evaluate the effect of this more aggressive program and then decide if we should increase the number of sessions per week going forward.
We are also on the lookout for another school for Jasper…one that suits his future needs (blind and multiple handicaps) better. I have to admit that at first, we were a bit shocked to see what kind of class mates Jasper would have, compared to the current situation. However, it is a reality that we have to face…