Again way overdue but let us tell you a bit about the past months and how Jasper is doing lately.
Jasper has been doing reasonably well. He had no challenges for the remaining of 2012. He managed to remain pretty stable and we still get the occasional smile and respond to a question usually something like ”yeeeessss” as it seems to take a lot of effort J.
In November we finally met a few of the Dutch ‘ CLN families’. We already met Joey and his family back in May but now we were finally able to meet Lennart (9 LINCL) and Bryan (9 INCL variety). It was good to spend some time together and to see the other ‘CLN boys’. Luckily they were doing well that day and were able to enjoy horseback riding on a special bed called a ‘huifbed’.
Jasper started horseback riding on a regular basis since we found out about the Johan Cruyff foundation. They pay for the first coupe of trial sessions so the kids can try and find out if it works for them. This foundation strives to have all children participating in sports; and that includes the handicapped children (regardless their level of functioning). Jasper really enjoyed the horse back riding so after the trial sessions we decided sign up for a monthly session. The horses keep him warm and their movement makes his body move too. During this session Jaspers lies on a blanket that hangs over the horses backs. It’s hard a bit to explain but if you look at the pictures below, it will become clear.
Also in November our friends from Chicago came over again to visit and Jasper really enjoyed being able to ‘talk’ to Alana in person and to hear her voice again.
In December we started the Christmas morning with a big seizure but it was a first in almost two months so I guess we had that one coming. The rest of holiday season was nice and uneventful.
In January we first celebrated Jeroen’s 10th birthday and Jasper always enjoys the family being together and listening to all those people talk.
Then on the 26th we celebrated Jasper’s 8 birthday. A birthday with even more mixed feelings than the one the year before. Grateful for being able to celebrate this day and scared because it feels like we are on borrowed time now. But we do what we always do; we celebrate and go on and try to live life day by day. Planning ahead is not really our thing anyway.
February turned out to become a totally different month. On Tuesday February 5th we learned that Jasper had his first pneumonia. The weekend before he was sleepy and ‘off’ and on Sunday he started to run a very high fever, which he never had before. The doctor at the AMC hospital recommended having the family doctor listening to his chest so the next day she came to our house.
After finding out it was not just a cold we headed for the hospital to see what to do next. We decided that it was best to get him antibiotics through an IV but due to bad circulation and to many blood draws there were no good veins available to get the IV in. So we had to administer the antibiotics through his g-tube.
That implied we had no real business being in the hospital but we stayed for one night there anyway to have him monitored closely. Next day we went home with the prescription and had to wait to see if the antibiotics would do their job as there was not much of a plan B. Luckily the antibiotics did the job real well; after about a week he was better again. Still very tired but no more fever and much more cognizant.
However, he did keep a nasty cough all through the winter and it bothers him a lot. I feel it is exhausting him sometimes as he is getting really tired from the coughing.
We were longing for some good spring/ summer weather for him and for all off us. And finally (about one month too late) things start to warm up here J
In the mean time we also decided to slow down the work around our foundation. Since the start of JAB we have raised and funded well over 1 million USD in research. Hence we were able to play an important role in the quest for a therapeutic treatment for this terrible disease. Recently we funded, in conjunction with a few other foundations in Ireland and the USA another large gene therapy study at the UNC in NC. Dr Steven Gray, for who we already funded two previous studies in the past, again executes this study. When this study will be finalized and the results meet our expectation, a new promising therapy will be within our grasp!
We want to thank again, everyone for the support that you gave us in the last couple of years. Thanks to your support we were really able to make an impact; push forward existing projects, commence new projects and the screening of thousands of existing medicines to see if they had some side effects that could slow down the progression of this disease.
That’s it for now!