Batten Disease is named after the British pediatrician who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten Disease, it is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCLs).
Although Batten Disease is usually regarded as the juvenile form of NCL, it has now become the term to encompass all forms of NCL.
The forms of NCL are classified by age of onset and have the same basic cause, progression and outcome but are all genetically different, meaning each is the result of a different gene.
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. Batten Disease is not contagious or, at this time, preventable.
Also.......
Batten Disease/NCL is relatively rare, occurring in an estimated 2 to 4 of every 100,000 births in the United States but no one really knows how many children there may be in North America or anywhere else in the world. The diseases have been identified worldwide. Although NCLs are classified as rare diseases, they often strike more than one person in families that carry the defective gene.As I'm sure you figured out this is definitely a disease you wouldn't wish on anyone. However a little girl at my church has been diagnosed with this disease. I will never fully understand what Kate's family is going through. I can't even imagine how much this is affecting them and changing their lives. I mean I have some idea but not the whole picture. Kate's mom posted a note on Facebook the other day and I asked if I could post it on here. It's beautiful. I just wanted to give a little history so you know why she is in the pain she's in and what she faces on a daily basis.
Last fall I attended a woman’s Christian conference and one of the speakers said when life is overwhelming and she doesn’t know how to handle a situation she says “Jesus, Jesus, Jesus”. This brings her peace, comfort and strength. When I heard this I thought, really, just saying that over and over and over again brings you peace? How? I was skeptical. Not skeptical that Jesus can, does, or would provide peace but skeptical that just saying His name would provide it. Don’t you need to pray and ask? It took several months for me to test this idea. I found myself in a very weak moment where tears were flowing, negative thoughts were consuming me and peace was nowhere to be found. I needed to dry the tears and walk into the office looking professional, put together and avoid the questions “whats wrong”, “what can I do?” People know my situation but I don’t want them to only see that when they see me. I have more to offer than being the mom of sick girl and when I am in the office I need to prove that I can separate home life from work life. Sounds harsh but it is reality. If I walked in with mascara running down my face and tear stained skin they would only see the thing that consumes my every thoughts. As I drove, I whispered “Jesus, Jesus, Jesus.” To my wonder and delight I found peace; tears stop falling. Since that day, when I feel overwhelmed or find myself tearing up while trying to maintain a conversation with someone I whisper to myself His glorious name. Each time I am given peace, strength and comfort. Who knew it could be so easy?
Over the last week, as we approach the one year mark of Kate’s diagnosis, the darkness I feel is once again overwhelming. I am whispering often His holy name and searching for, praying for and expecting peace. Tonight, as I drove with tears flowing I LISTENED to a song I normally only hear. I allowed the words to speak to me. I know that He sent them (the words) to me, to direct me and provide me with the reassurance that all I need to do is call on Him. Whether that is by saying His name, praying, reading the Bible, etc. He is there to comfort me in the darkness and He is the light that I see in my darkest moments. Without Him this journey would be impossible. So tonight I say loudly “JESUS, JESUS, JESUS. Light my path, give me peace, and provide the strength I do not have.”
I share this with you so you can have the same peace I have. He loves you! He proved it when He carried your cross and died for your sins. Shout His name, allow Him to consume you!
When I call on Jesus by Nicole Mullen:
Verse 1:
I'm so very ordinary, nothing special on my own.
Oh, I have never walked on water,
And I have never calmed a storm.
Sometimes I'm hiding away from the madness around me
Like a child who's afraid of the dark
Chorus:
But when I call on Jesus,
All things are possible
I can mount on wings like eagles' and soar
When I call on Jesus,
Mountains are gonna fall
'Cause He'll move heaven and earth to come rescue me when I call
La la la la la, la la la la la
Verse 2:
Weary brother, broken daughter,
Widowed, Widowed lover you're not alone
If you're tired and scared of the madness around you
If you can't find the strength to carry on
Chorus:
When you call on Jesus,
All things are possible
You can mount on wings like eagles' and soar
When you call on Jesus,
Mountains are gonna fall
'Cause He'll move heaven and earth to come rescue you when you--
Bridge:
Call Him in the morning', in the afternoon time
Late in the evening' He'll be there
When your heart is broken,
And you feel discouraged,
You can just remember that He said
He'll be there
Chorus (2x):
When I call on Jesus,
All things are possible
I can mount on wings like eagles' and soar
When I call on Jesus,
Mountains are gonna fall
'Cause He'll move heaven and earth to come rescue me (back to top first time, 2nd time finish with "when I call")
