Archive for 15 November 2009
15 November 2009
It’s time again for our monthly update. Last month, we expressed our frustration with the Chicago Public School organization, but fortunately, we left this all behind us as they were able to place Jasper in the Chicago Lighthouse. This school is specialized in working with multi handicapped kids. It was quite a (mental) adjustment for us to bring Jasper to such a school and let in all of his impediments, but it is our best option under the current circumstances. Jasper loves the place, but he only attends for half days as he doesn’t have sufficient energy to do a whole day program.
If only we could avoid similar and more deadly frustrations with the NIH. Over ten researchers have spent time and effort establishing parameters necessary to screen existing drugs for possible side effects that slow down the progression of the disease. The agreement was that if we arranged this in the private sector, the government/NIH would quickly do the actual testing of the drugs. The point of this was to potentially find near-term treatments for Batten/LINCL. Unfortunately, they are now saying that they need more time to look at it. So now we are waiting, while our precious kids are rapidly deteriorating. The very arm of the NIH that is supposedly focused on getting these treatments to actual patients is now saying “wait while we get our ducks in a row.”……Needless to say how we feel about this.
On a positive note, we feel so blessed by the donations we continue to get. Fundraising was once again really great this month. Duncan Valentine ran the NY marathon and raised about $10,000. Next to that, a high school teacher in the Netherlands (Ms. Joke Dijk-Boersma) and her classes raised about $2,500 by selling books with poems they made in honor of JasperAgainstBatten. They even made it on Dutch National television. Also, The Philadelphia option trading community is doing something for us this month. Their goal is to raise $20,000 in the month of November. So far, they are doing pretty well! On Nov 22, we have a wine tasting event in the Netherlands. Finally, a major family health club in Chicago, The Lakeshore Athletic Clubs, will be holding a big family event/birthday bash for Jasper on Sunday January 24. We will fill in the details of this event as we get closer. Sometimes, we can hardly comprehend that so many people are reaching out to us and helping us in such great ways!!
Jasper did not noticeable deteriorate this month and the myoclonic seizures did not return. Our seizure control is still fine with on average on seizure per week that usually barely last a minute. He still devours all the food we give him. Only drinking is a bit challenging for him.
Last but not least; the CBS Evening News guys finally aired a national report tonight on JAB (that was filmed over this summer).