Archive for 7 August 2010
7 August 2010
It has been awhile since we wrote our last update as we try to enjoy the summer. Jasper is pretty stabile at the moment although he has lost some more vocabulary. He is no longer able to say Bou or papa. But sometimes, a certain word comes back for a little bit. We recently started another powerful antioxidant called NAC and believe it or not, Jasper started to make more sounds right from the start. He even sometimes repeats words that we say
Our speech therapist that evaluates his ability to swallow on a regular basis, thinks that it is still no problem to feed Jasper by mouth. Of course we have to blend the food first. We also ordered a wheel chair a couple of weeks ago. This week we got the word that it is ready to be picked up…
Jasper attends summer school at the Chicago Lighthouse School, so he goes to his usual place. Jeroen goes to a summer camp here in the city with his friend, Cole.
Two weeks ago, Jasper and I had a really important meeting at the Lighthouse School. Our very senior Senator Richard Durbin came to visit the school. We had the opportunity to thank him for the letter he wrote for Jasper’s birthday back in January and also had some time to take pictures with the Senator and Jasper. Of course, I wrote him afterward to thank him and to ask if we can schedule a meeting to further discuss the treatment of orphan diseases and what we need to save our little children. We were assured by his community outreach director that the Senator would get the letter and I really hope he gets back to us on this topic!
Last weekend, we attended the annual family convention of the BSDRA (National Batten Disease Support and Research Association). Families from the US but also Europe (Spain and Serbia) were present. There was also a number of researchers to tell us the latest about their work. It was very good to catch up with the other parents (that we frequently contact through other mediums like email, face book and conference calls). They know exactly what we are going through and understand our grief and sorrow better than anybody else. It’s the saddest thing that this disease has to bring us all together. During the conference, our Batten community received bad news; that another little boy in Chicago had just been diagnosed with Late Infantile Batten Disease. This boy is the same age as Jasper. So now it’s 4 of us here in the Chicago area.
On a positive note, it seems some very good things are happening in the area of fundraising:
The Dominicus School from Utrecht raised 1450 euro in a fancy fair.
A tennis club in the Netherlands made JAB the theme of a tournament and raised 700 euros for us!
Jolanda from Woerden (town in the Netherlands) was so touched by Jasper, she organized a fundraiser around a walking event and raised 1090 euros!
Jennifer Grosshandler from the Chicago area once again stepped up for us in an amazing way last week raising 2000 dollar(!) for JAB as she completed her Iron Man Race.
We are so appreciative of the individuals who are touched by our story and want to make a difference for Jasper and these children!
Between the four of them, well over $5,000 has been raised!
We also were awarded a $50,000 (!) donation in the form of a grant from a private equity fund. They prefer to stay anonymous but of course we want to thank them very much for such an enormous donation!
On Friday, October 22nd, Binny’s, the largest Wine and Beer Distributor in Chicago, will hold a larger fundraising event for us. This is the second event they are so generously providing for Jasper Against Batten. They have a huge, newly renovated location in the Lincoln Park area of Chicago, where people can come out to taste wine, and listen to music and we’ll organize some other nice things around it as well.
In addition, the Lakeshore Athletic Club will be hosting their annual Family Festival in late Winter for Jasper Against Batten. Hundreds of people attended this wonderful, fun event for kids and we are hoping to top that for this next one. More to follow about that event.
As already mentioned before; we no longer travel with Jasper to the Netherlands. The physical price for this is too high; stress and different time zones are likely to push a number of neurons over the edge and result in further progression of the disease. However, Jeroen and Bou will go there for a week to touch base with friends and family. Jeroen is nervous but excited about this as it will be the first time that he will be away from me for such a long time. And I, of course, have my own feelings about that! Still, he can spend the entire week with his dad. And thanks to Skype we will still able to see each other on a daily basis.