Archive for 2 February 2010
2 February 2010
Since our last entry, we are now back from our home leave in the Netherlands where we went for a couple of weeks. It was great to be back there and spend the holiday season with our relatives. Furthermore it was funny to see that the entire country was in disarray because of a few inches of snow whereas in Chicago it’s more or less business as usual with similar or much worse weather circumstances.
We came to the conclusion that traveling has become much harder on Jasper. It took him quite a while to get back to his usual routine and he had a pretty significant seizure when we arrived there. That’s something we hadn’t seen in a while. Fortunately, we haven’t seen it again since then. The return to the States was difficult as well; it took him almost a week to get back to himself.
We have switched from one AED (Anti Epilepsy Drug) to another; a lighter version that is supposed to have less impact on his gait. Unfortunately, we can hardly notice any difference and actually, Jasper seems to have declined significantly in the last couple of weeks. In particular, walking (even with braces) has become a real struggle. Speaking is also more difficult. Instead of Pip he is now saying Pi. Yet, somehow, despite all of this, Jasper remains a cheerful guy. He is happy in his school, smiles when he sees his teacher and pushes me away as if to say; ‘bye, please go now’. If I pick him up at a bit before noon he gives me a big smile and a hug which makes my day!
In terms of fundraising, we’ve had a great start to the year. On January 24, the Lakeshore Athletic Club on Fullerton (in Chicago) organized a big family event for us in honor of Jasper’s 5th birthday and in honor of all of the kids in this city who have participated in helping Jasper. The turnout was great with over two hundred people and everything was perfectly organized! There were all kinds of activities for kids while the adults could watch sports on television and eat food donated by a lot of local restaurants. Even Starbucks sent over more than a dozen volunteers with their coffee. One of the news anchors from ABC 7 (Ravi Baichwal) was MC for our event. Later on that night, ABC ran a report about it on their daily news show. (A few days earlier, NBC News did a story about Jasper as well.) The two other Late infantile Batten families from Chicago also attended our event (Noah and Laine from the Vanhouten family and Bridget Kennicot.) It was so nice that they were also there to show the world that there are more families who suffer from this cruel disease but it was also very poignant. Three beautiful kids in the same stroller / wheelchairs and Laine on her dad’s shoulders (fortunately she is not really affected yet) and the healthy brothers and sisters that play around them like it’s business as usual.
Of course the show must go on in the Netherlands as well. Last week we had a neat article in a large women’s magazine and at the end of February we have organized a cool poker tournament in Amsterdam with the financial community.
Next week is a conference for lysosomal storage diseases in Miami. We will attend this conference and have planned meetings with various researchers and other ‘Batten families’.