Archive for 14 September 2009
14 September 2009
Preferably, we would only write updates if there was something positive that we could mention. Unfortunately, it doesn’t work this way with Batten disease. Our fundraising efforts are a bit slower this month (‘only’ fifty thousand dollars in the last couple of weeks) and though Jasper started off the month really well, he has had a pretty significant setback this last week.
Actually, Jasper started the month so well that we cancelled the Botox treatment that we had planned. Instead, he will get braces that he can wear during the day (next to the night braces that he already has). However, the last couple of days he is, all of a sudden, walking very poorly. He lacks enough enthusiasm to even try to stand up for a while and gets tired very quickly. This week he also developed all kinds of Myoclonic jerks. It made him very unhappy and it is heartbreaking to watch it. We have increased his seizure medication (Depakote) to get a better control. Hopefully this strategy works else we have to start cutting carbs from his menu…
There is also no good news yet regarding the Cornell gene therapy trial.
We spent the last month looking very extensively for other alternatives. We spoke with various doctors, researchers and biotech companies both in the US and Europe. However, it seems that whatever alternative we explore, they all need at least approximately 2 more years before they can move into a phase I clinical trial. One researcher we visited is very dedicated to this area of research and appears to be close to a very effective gene therapy treatment. However, it will likely take until at least year end to finish the ‘proof of concept’ study. After that, it might take up to another year to move into a clinical trial. We are in discussions with this lab to fund part of their research in order to run certain processes parallel and expedite matters. This might save us a few valuable months. Of course it remains to be seen if all this will become available to Jasper in a timely manner……
Next to this we are still working hard to get Jasper into a new school program. The 22nd of this month we will have our IEP meeting with the evaluation team of the CPS (Chicago Public School). We hope that they share our conclusion with regards to the school we think is best for Jasper at this point in time.
Last but not least; last week we had an article in a big Dutch magazine; “The Libelle”. It was in a format of a mother’s letter to her son and included A letter from Pip to Jasper. We received a lot of very nice responses from people in the Netherlands!