Archive for 26 April 2010
26 April 2010
We try to post an update on our website on a monthly basis but this time we clearly didn’t make it. There aren’t that many new things that are going on and we’re actually in a bit of a slow period.
Fortunately Jasper is pretty stable after some significant decline in the first couple of months of this year. He is also in a much better mood recently. I guess he sort of accepted all the new ‘restrictions’ that were imposed upon him by the disease.
Last week we visited a speech therapist who is specialized in chewing and swallowing to have Jasper evaluated. Swallowing has become a less natural thing for Jasper and this is something we monitor closely. If little pieces of food or fluid get in his lungs because of the swallowing issues, this can result in pneumonia. Obviously something we certainly want to avoid. Fortunately it seems that we’re good for now so there is no need yet to get Jasper a feeding tube. But we did put ourselves over another mental threshold; we ordered him a real wheelchair. It will probably take a couple of months before he is here but we ordered a ‘Zippie’ in candy blue.
Although we get confronted with this situation on a daily basis, it still remains almost surreal. About 1,5 years ago our life was more or less normal. Our reality now is that we have to deal with a compromised child. A child that should have already be in a ‘full time’ school program to learn how to read and to write. A child that should have friends to play soccer with. However, if our telephone rings it’s never for a play date for Jasper. And if our doorbell rings it’s never a boy from the neighborhood that wants to pick up Jasper to play in the park…Other kids his age progress rapidly developmentally but Jasper has to fight to maintain whatever he has left in terms of skill set…..surreal.
Next to this big pink elephant we have, of course, our organization JasperAgainstBatten. Everything moves much slower than we want but we nevertheless achieved a lot in the last 12 months. We already raised a significant amount of funds and we are already funding various studies / research in the US and (before long) the UK. I think we have reasons to be proud of what we have accomplished. Furthermore we are working more closely together with a couple of other family foundations in the US. Every 2 or 3 weeks we have a conference call with about 6 families. We discuss topics like science, research, funding, fundraising and publicity. Hopefully we can achieve even more in our fight against this demon if we can work together in some aspects.
With regards to the fundraising; it’s a bit of a slow period but we participated this month and last month in two major running events with JAB teams. First we participated in Chicago with the Shamrock Shuffle run. Next we participated in the Utrecht marathon. In total we got a bit shy of 10k USD in pledges. Furthermore we got a couple of nice donations from the financial world!
A large Dutch travel agency has generously reached out to help us; they start this month with the distribution of JAB poem booklets to about 30,000 of their customers. We certainly hope that this will generate a good response!