Friday, January 14, 2011

No Parent Should Ever Have To Face

We have all experienced the joy of bringing a new life into the world. We have experienced the same dreams for our child from the very first time we hear the words, “Your pregnant.” It is such a joyful time something that words can hardly express. It is one of the happiest times in our lives as we work hard to prepare the nursery, we wonder and dream of what our child will look like, what her personality will be, the anticipation of holding our child in our arms for the first time. Watching our child grow, reaching the milestones of sitting up, rolling over, walking and saying her first words. It is a beautiful experience as parents and grandparents.

Now imagine as a parent you suddenly realize that something isn’t just right with your child. It might be something as subtle as their balance doesn’t seem just right, she falls a lot or is unable to take that first step. It may be as severe as experiencing your child go through a seizure for some unknown reason. Wait it could even be that she just doesn’t seem to be thriving or her head just doesn’t seem to be growing like it should. You seek medical attention to find out why things are not right with your child. Test after test is performed, you sit praying, hoping, and holding your child, comforting them through all these tests, comforting yourself, your spouse, and searching for answers that just do not seem to come as quickly as you would hope. All the while you keep telling yourself that the findings will be a simple diagnosis, something a little medical attention will be able to cure.

Imagine if you can, your sitting before the Doctors and the words coming out of there mouths are words you never ever in your life ever dreamt you would ever hear. Batten Disease, Neuronal Ceroid Lipofuscinosis. Try to wrap your mind around that. What is it? What does it mean? What can be done for it? How can the Doctors make my child better? Why does my child have this? As your questions begin to get answered, and the reality of what this disease is you discover your world is crumbling down before you.

When my friends first told me that their granddaughter was diagnosed with Batten Disease, eight years ago, I couldn’t wrap my mind around what they were saying. I had never heard of this disease before. As they tried to explain to me what it was and what they had to look forward to, I still could not comprehend just what this diagnosis meant for their granddaughter, for her parents, and especially not for my dear friends. Have you ever found yourself in a situation where you just don’t know what to say, because you just truly do not understand what your being told. I just can’t even imagine being in this family’s shoes hearing this news and dealing with the emotions they dealt with upon learning more about this disease.

Just what is Batten Disease? Batten disease, also known as Spielmeyer-Vogt Sjogren-Batten disease it is a rare, fatal disorder that begins in childhood. It is an autosomal recessive neurodegenerative disorder. The most common neurodegenerative disorders that you might be able to relate to are Parkinson's, Alzheimer’s, and Huntington’s diseases. This disease is more then likely to strike in early childhood, but in rare conditions it can strike even in adults. The progression of the disease may differ a bit depending upon the age, but the end result is always the same. This disease leads to the deterioration of many aspects of the human body. It leaves the body unable to develop normally, there is blindness, sight loss, seizures, and muscle deterioration associated with Batten Disease. Any child who is diagnosed with this will become bedridden at some point, their tiny bodies, become distorted as they fail to grow muscle mass. We can only imagine the pain that a child with this disease has to endure. At this time there is no known cure, prevention, and while they are researching for medications to slow its progression, at this point there is no cure and the end result is always the same. You can read more about Batten Disease, here.

The research moves forward, in all areas of combating this disease, from stem cell research, to trial therapies. So much still needs to be done to understand this disease and it’s progression. We often think of all the children’s cancers, and realize how far they have come in curing so many of those, wouldn’t it be a wonderful day if they could come up with a cure for something as devastating as this disease, or at least be able to treat it, slow it’s progression down and allow a young life to have some quality. It truly would be a wonderful day if we could just wipe out all childhood diseases, but since we can’t do that we need to truly focus on what we can do to have cures and give quality of life.

Can you imagine being told that your 2 year old has this disease, she will lose her sight, forget how to walk. Depending on how the disease progresses, one can’t say how many years she will play happily as any other child, ride a bike, run, dance, will she even get to go to school. She will loose all means of communication. She will become bedridden, there will be the need for feeding tubes etc. While they suggest physical therapy to help with slow muscle deterioration, but it doesn’t stop the wasting away of your child. While medications may help with the seizures, nothing will stop the progression or give your child any more of a chance to a long quality of life. You know you can’t take any moment with your child for granted, you hold onto every day that you have with her. You look for the sparkle in their eye, that shine on their face when you say their name, or as you carefully hold them in your arms. I know this has been very difficult for my friends and their entire family. It has been very difficult for me to watch them go through this. As I said earlier, I just truly did not understand how Battens disease affects a child. It truly did not become a reality to me until my friends shared a few pictures with me, that I began to wrap my mind around what this family has gone through. My heart breaks that I tried my best, but it wasn’t until now that I fully was able to put all this into perspective.

I really felt at a loss when they had to make it known that it was time to call hospice in, can you imagine when your child is 10 years old, you are having to call in hospice to help rid them of the pain, to make them more comfortable. I contacted the family and asked if I could share their story, bring some awareness to Batten Disease, through my blog. I of course promised there would be no mention of names nor no pictures shared. By visiting The Batten Disease Support and Research site, you can see and read about other families that are going through this. The stories are all the same as to how this horrible disease has affected their lives and the lives of their children.

My plea to my followers is simple, of course keep this family and all families facing this in your prayers and thoughts. Consider donating to this cause and let’s see if we can’t make a difference. Let’s fight for a cure, better yet let’s fight for the answers to prevent this disease from affecting any child. You can donate at The Batten Disease Support and Research site by just clicking on the banner below.


Pin It


  1. I have never heard of this before. Thank you for sharing the information. I'm going to add this cause to our list of charities to support this year. Our prayers are with your friends.

  2. I had never heard of this before, either. I'll be reading up.

  3. This is a heartbreaking story. How horrible it would be to watch your once healthy child to slip away slowly like that. I cannot even imagine the suffering Batten families must be going through.

  4. I am a Batten parent and just wanted to say thank you for this post. It is a terrible diagnosis, a parent's worse nightmare as another Batten parent calls it, but one of the ways we are going to find a cure is by making more people aware!!!!

  5. I never heard of it before either. I will be reading more.

  6. I'll be praying for that family and for their child. How incredibly hard that must be for them. I'll also pray for the other families effected by this

  7. Great article my friend......Thanks for opening my eyes~