What is Juvenile Batten Disease
You can find a whole host of links and websites if you’re interested in looking but I will copy and paste a link that I found. I’m currently taking a breather after settling Rachel in to her room with a snack and a drink after having a total meltdown. I actually googled “violent outburst batten disease” and came up with the link below. If you want to learn about Juvenile Batten disease it gives a lot of good information. Please keep in mind that there are 4 kinds of Batten Diseases and that Rachel has Juvenile. The clinical trials for the other types do not apply to her nor do the progressions or information. Here is the link:
This all makes so much sense now (well, the symptoms). I guess “sense” is a relative term because I would really like to know how this is even possible. I think this has to be just about the worst way to die. I just can’t get over it. I hope that this stage of my grief (I guess its called that) passes quickly. While I want to crawl into bed and never wake up I have lots of people who love and need me to continue, with Rach at the top of the list. I did put her in the boy’s radio flyer and take her out for about an hour after she calmed down after the above meltdown (this post was left open for a couple of hours, hence the gap of time).
I’m sure I will write again soon about this, at least in the beginning… I will get some recent pictures up soon.
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Babe,
I have no idea what to say. I just want you to know you are on my mind. If there is anything I can do please let me know. Please. I’m very serious.
Kate, I have been looking up as much as I can on Batten and I cannot believe what I am reading. Are there any experimental drugs/trials or anything that can be given?
I am going to call you every day…you do not have to pick up the phone. Pick up if you feel like it. Don’t feel like you have to call me back. I cannot stop thinking of Rachel and how unfair this is. I want you to know that I will do what I can and help out…:watch the store…etc…
OH GOD KATE! I just found all of this out… I’ve been reading some of your posts on here (haven’t gotten to very many). I’m soooooooooooooooooo SORRY you have to go through this!!! HUGS!
Just want you to know I’m thinking about you. It’s all just so unfair. I’m thinking about you, your sweet girl, and your family. Many hugs.
(((HUGS))) I am searching for words of wisdom, from one rare-disease mom to another. It’s different because Morgan’s isn’t 100% fatal (just yicky odds) and the progression is more rapid.
It will be days before you will even be ready to take this to heart, but here goes: each day can be spent taking advantage of the goodness it contains or can be spent wallowing in the what-ifs. Make each day count. Life is short, for all of us. Take care of yourself, because you have to in order to do what you gotta do. ((HUGS))
I read a very little bit about Juvenile Batten Syndrom. The one thing that comes to mind is if Batten (and Tay Sachs, I’ve been following the story of a local girl with this) might be related to the Lorenzo’s Oil disease (adrenoleukodystrophy). All three seem to be related to a missing enzyme or inability to process some enzyme. If you haven’t seen the movie, the quick and dirty is: son has 100% fatal genetic disease, parents go on medical research crusade to find a cure. They do not find a cure, but do find a recipe that stops (or at least greatly slows down) the progression of the disease. True story; boy wasn’t expected to live past age 8, he died at 30. He never regained lost abilities, but the decline was nearly halted.
Words fail me but I had to come and write something since I can’t stop thinking of Rachel and the family.
I’ll continue to hold you guys in my thoughts. x
I just heard the news and wanted to tell you that I’m keeping you, John, and all four of your beautiful kids in my thoughts.