Rare disease day is this Sunday, February 28th! http://www.rarediseases.org/
When people find out Jacob has Batten Disease, they tell me they have never heard of it. My response to that is “funny thing, I had never heard of it before either”. The actual words we heard were Neuronal Ceroid Lipofuscinosis (NCL). Then we discovered what those words meant. The following is taken from the BDSRA website (www.bdsra.org) “The forms of NCL are classified by age of onset have the same basic cause, progression and outcome but all are genetically different. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate and it is presently always fatal”.
Because this day is coming I want to take the opportunity to continue to spread awareness. Research for Batten has the potential to help others diseases such has Alzheimer’s (http://www.ibridgenetwork.org/cornell/method-to-treat-alzheimer-s-disease-by-increasing-the-abilty-) and Parkinson.
It’s not just lack of funding for Batten Disease; it is lack of awareness as well. Who else will be the voice for these children? Would you do nothing even though a cure could be just a reach away? The only way to get help is to ask for help. That’s why I am asking you to help us spread awareness about Batten Disease. You can copy and paste the link to Jacob’s Carepage www.caringbridge.org/visit/jacobgeer or www.jacobsprayer.org and pass it along to your friends and family. If you have not seen it already, please watch this video http://www.youtube.com/watch?v=DQChRSCWtYA . It is very informative about the disease. You can also look up Batten Disease on YouTube and you will see many videos from families who are also trying to reach out.
As I have said so many times before, the clock is ticking. Only God knows how much time Jacob has. Now, I know there is a reason for everything. Lessons to be learned. Life experiences to be had. Grace from having a child like this. As much as I want to live in the now, without a cure or even treatment to slow the course down, I know the future and what this disease is going to continue to do to Jacob. I say continue because it already has taken a hold of him. The path Jacob would have is what I mentioned above. We want him to fight this. We want to keep him active both physically and mentally in the hopes of prolonging skills. At the same time, we want to enjoy our time with him and cherish all the memories. One person had a great quote the other day “my child is not dying from Batten Disease but living with it”. It puts things into a different perspective. I like it. Jacob is alive and thriving despite this diagnosis.
I have met so many children with Batten Disease and so many families that have been affected by it. Although we gather together (at the annual conference and meetings here and there) and connect on Facebook to offer each other support, it would be wonderful to celebrate beating this and for the families who have lost their child/children to know that other children will not have to have the same fate.
Could you help Jacob and the many others like him? Could you take a couple minutes to pass those links on? Even if you reach out to only one person, that one person could make a difference.
I have business cards for Jacob’s Prayer. I am willing to send some out if anyone would like to help spread awareness that way too. Just send me an email chris@geerfamily.com and let me know if you are interested! Also, if you have any ideas for other ways to help spread awareness or raise funding for research, please let me know! We need to encourage others to gather together to join the same fight!
I don’t want to keep shedding tears of sadness. I want to shed tears of joy that we BEAT this disease! I know it is God’s will for whatever happens. If not a cure for Jacob, then all I can ask God for is the strength to get through this.
