Archive for 11 December 2011
11 December 2011
We are back in the Netherlands for well over 4 months now and the dust has settled. Pretty much all the reconstruction that we envisioned has been completed, our car has Dutch license plates, and the last boxes from the relocation left our house many weeks ago.
We even had our first US visitors over. Jeroen’s best friend Cole was here with his twin sister and mom to check out our new environment.
Jeroen is doing very well in school (taking into consideration that he was in a US Montessori school for nearly 4 years). An awesome report card is probably the best evidence of this. He only needs to do a bit of extra work with regards to the spelling from the previous grade to get up to par with the rest of the group. He is also starting to understand and appreciate his new sport, soccer, better every week.
We are also reaping the full benefits of our relocation now re: Jasper. First of all, we get a few hours per day of professional support at home (which really makes a very significant difference). The two of us no longer have to do everything ourselves. Furthermore, we got some appliances to make things a bit easier. We got a very nice bed that’s adjustable in height (can be tilted and is totally safe so Jasper can’t hurt himself or fall out of bed). We also got a stair lift and another special hoist, to get Jasper in and out of bath without sacrificing our backs, is on its way.
Jasper has been attending his school (day care center) ‘De Ster’ now for a while. After a rough start (he needed some time to get comfortable with the new place), he seems to like it a lot. He also gets his weekly therapy there to keep him in good shape as long as possible. Since we tweaked his meds (after consultation with his new hospital, the AMC), he’s suffering much less from muscle cramps. As a result of this, Jasper is a happy camper most of the time.
The epilepsy is also well under control; with a seizure about every three weeks we’re still pretty close to our long term average. This is mainly thanks to our hospital, the AMC, where they went out of their way to import Jasper’s primary seizure medication Depakote from the US. This particular drug is unfortunately not available here in the Netherlands and it really means the world to Jasper in terms of seizure control.
It’s almost Christmas and despite my previous remarks about being settled in by now, this is a special time of the year and we have special memories attached to it. It is one year since we were staying in NYC for almost a month when Jasper got his gene therapy surgery at Cornell University Hospital. Back then, we were walking through Central Park on an almost daily basis, but today we’re walking through Woerden (a small town in the very center of the Netherlands). So there have been a lot of changes over the last 12 months…..
With JAB, we have not been proactive in the fundraising due to the relocation. However, we still get donations from time to time. Additionally, we had a very nice fundraiser back in September that was organized by Bcause. This organization put together an awesome rally with old sports cars and and made JAB the charity of the day. This generated almost 10k USD, hence a big ‘thank you’ for Bcause! Next to that, we have Jolanda who collected a few hundred euros during the final live performance of the band Nederbob (which already did a performance for Jasper a while ago); and the Protestant Church of Linschoten supported us again with a similar amount.
As for the research; at this point in time, we are working solely with the UNC, where we are funding a follow up study to an earlier one with gene therapy. We recently received some preliminary results that look (again) very promising. Next year on March 13,th the International Congress on Neuronal Ceroid Lipofuscinoses (Batten Disease) will take place in London. Hopefully, our UNC researcher will be able to present his results there to the Batten community. We are already contemplating which study will have to be designed (and funded) beyond that in order to make it compelling enough for the FDA and a PI (Primary Investigator) to approve and move forward with a clinical trial.
For everyone who follows us: we wish you a happy holiday season and a happy New Year!