Archive for 11 October 2009
11 October 2009
Another month has gone by. In the last update, we mentioned that we had
an IEP meeting scheduled to have Jasper placed in a special education program,(away from the regular public school) given the progression of his disease. It has turned out to be a very frustrating introduction to the bureaucracy of the Chicago Public School system (that currently faces enormous deficits and is thereforeprobably not very eager to refer kids to the more expensive special programs). What was supposed to take one meeting turned out to be 3 meetings instead, with one lasting 5 hours…It is a painful process that makes us want to scream. Jasper will continue to deteriorate before our eyes and the clock ticks on. The process is taking time he just doesn’t have. Finally, the evaluation form was finalized yesterday and submitted to the Chicago Public School headquarters for further processing. Now all we can do is wait to see if they accept it and try to work with our preferences.
In the mean time, Jasper obtained his new braces for daytime. He is not always too happy with his new equipment, but it is certainly a significant improvement in terms of his walking ability! Jasper has not seemed to have deteriorated too much in the last month although I sometimes suspect that his eyesight has become worse. The seizure control was also very good for awhile until last week when he suddenly had a seizure that lasted about 4 minutes in the middle of the night. It has been a long time since we experienced something like this and it definitely was scary! Of course, we hope that it was a ‘one shot deal’ and not a change in his overall pattern. On the bright side; the myclonic seizures that Jasper suffered so much from last month have disappeared. Ironically, the day that we were to start a new drug (Klonopin) to try to control them, the jerks all of a sudden stopped!
This month was also absolutely great in terms of fundraising. We received significant donations from both sides of the ocean and various groups of people did little fundraising activities for JAB (see also the section ‘acknowledgements’). The biggest donation we have received to date was from Capstone; a hedge fund in New York City that held a one day charity event last week on behalf of Jasper Against Batten. They raised 160 thousand dollars in one
day!!! We started our fundraising campaign a bit over 5 months ago and have
raised already more than $750 thousand dollars. That’s at least something we can feel grateful about. It would be really huge to get to the one million dollar mark before the end of the year as there is still so much research for this disease that needs funding!
Next to that, we had a nice article in ‘De Volkskrant’; a Dutch national
newspaper that resulted in a lot of good reactions. And last but not least: we
got the news from the Dutch tax authorities this week that they approved our
Dutch foundation. This means that donations from Dutch residents to our
foundation there will be tax deductible (assuming certain conditions are met). It
will also enhance the credibility of our organization there.