What is Batten Disease?

[jacob3800]

Praying will not do sh*t to help the victims of this disease. Spreading the word about this disease will do more help than a prayer from any religion.

[101LakesNetwork]

@jacob3800 This is an opinion of one father’s perspective. The whole point of the video is to spread the word of Batten Disease. I wanted different opinions of 2 different sets of parents that are going through this. So it just upsets me when people get more upset about Marcus’s beliefs then the disease itself. This disease is terrible it KILLS children! Isn’t that worse than one man’s beliefs?

[jacob3800]

@101LakesNetwork Of course, but everybody in the comments always mentions praying that there will be a cure for this horrible disease instead of actually talking about funding.

Yes, I went about getting my point across in a kind of aggressive manner and for that I'm sorry, but I do think that people should stop relying so much on religious belief as a cure for a disease like this.

[SisterMaryTeriyak]

@jacob3800 You took the worlds right out of my mouth.

[Thecoolgirl324]

Thank you. Now I know why a guy that is 7 has a wheelchair and acts like this.

[musicgirlly1]

I feel so sorry for those kids. Im only 12, but to me, children, and adults with disabilities and diseases are Gods angels even though everyone is Gods child, these are Gods children on earth to show you that no matter how different you are, you are loved by someone. God bless them and I hope they make the best of life every day! :)

[easysteve14]

This is a terrible disease that is very much underfunded. Please consider donating to one of the Batten Disease Charities. In October I will be running in the AC Marathon and raising money for Drew's Hope Research Foundation. For more information please read his story and watch the video.

Please consider a donation and learn more about Drew's story and fight against Batten Disease.

[gurukirpateri]

this video made me cry god bless them. i will them in my prayer

[Lesterslisa]

My nephew Jon also has Battens, he's 18 now, diagnosed @ around 5 and blind by 7. We love him a LOT! We'll never stop praying and believing in a cure. Stem cell research.. embryonic stem cell research.. IDK & don't care how, just that it DOES happen. Researchers need help everywhere. We live in Idaho and Jon is the only person in Idaho with this disease. No One around here knows about it and my sister barely has the help that she needs to take care of him. It's all sad and super tragic.

[jenjen21ification]

This is very scary and sad. I feel for anyone who has to go through something like this.

[MsAllstar00]

I about cried.I pray for those children and there familys it must be hard for them

[mikeyxxxf]

god bless his soul and your family

my heart goes out to you guys

[opt1p1ex]

I must admit I'd never even heard of this before, my thoughts to those brave parents, carers and those affected by this disease.

[mikeeroberts]

My sister is Miranda Goranflo, mother of Hailey (2002-2010) affected by Batten Disease, as well as Carter, who is about to turn 5 and is also affected by Batten. Thank you for this video. The description says you're in the process of finishing this, and I can't wait to see the final product. We are helping spread the word and sending this link to our friends. Thank you for your work and your prayers. We are praying for you too. -Mike Roberts

[poeticpaul]

You are allsuch wonderful and brave people.

I pray every day for all the children and families

let the world know this 28th feb Global Genes day). just how special your children are.

Gaucher Daddy

[FantasyFanatic911]

This made me cry. Those poor children and parents. That last mother is what really done it ofr me. I have SOD and my Mum has the same problem. My mum distribes it as "Constantly being slapped in the face." It makes me sad that I am the casue, yet I don't know what else to do. I am who I am and I can't change that. Even though we have a disability, we are people too. Don't look down upon us, accept us for who we are.

[MicrosoftX2000]

Batten disease is a rare, fatal autosomal recessive neurodegenerative disorder that begins in childhood.

PLEASE CONSIDER DONATING AND POST THIS TO ALL THE VIDEOS YOU POSSIBLY CAN!!!

[mickeysrw]

I work with Sarah Inks as a home healthcare giver and Sue was telling me about this documentary. I was just wondering if it was going to be aired on television in Omaha? If so when? Otherwise, what is the name of the documentary and I will see if I can find the whole version somewhere else! Thank you for your time, I really appreciate it!

[101LakesNetwork]

We are working on distributing this film out to more cities and towns throughout the country.

[555com333]

I was privledged to know and experience the life of a baten's child through her family. I will tell you that I loved that little girl, my heart aches now that she's gone, and thank God for the gift. Loving these children is an AMAZING blessing.

[irelandlady]

Thank-you for sharing your son's story and for doing this video. I too am praying for your family and other families who are dealing with Batttens.

[sueinks6]

I hope this is seen by many many people. Thanks for doing this to help our kids!

[green1smile]

we're praying here in the Holy Land for all the batten kids.with the Lords help we pray a cure will be found soon Amen

[Kalevala87]

@green1smile Pray less, fund more. THAT is how a cure is going to come about.

[green1smile]

@Kalevala87 hi,

 i'm a neurophysiologist who has done research for years on genetic neurological diseases,and yes,we not only do research,we pray for success and more funding for the discovery of that long needed cure. thank you

[Kalevala87]

@green1smile Oh, sorry if I trust research more than I do the alleged power of prayer, which has consistently proven to be non-existent. Kudos for your work, but prayer won't cut it.

[Kalevala87]

@JonahTorn Actually the claims that prayer has healing properties are awfully frequent, despite all evidence that that's not the case. My point is that there are more constructive ways to spend time than praying. Like funding research and juggling balls.

[Kalevala87]

@JonahTorn Your only point in breaking down what I said is trying to hide the fact that you have no point to make in the first place. And no, I have never backtracked on what I said. Prayer remains a waste of precious time, which could be used more constructively for the benefit of everyone. Dissecting the syntax of what I said, ignoring the fact that the semantics of a sentence is more than the sum of its syntactical elements is silly and shows you have nothing to say about what I really said.

[Kalevala87]

@JonahTorn Now, go to the back of the classroom and be quiet. Also for the benefit of everyone.

[JonahTorn]

@JonahTorn I meant to type "Praying for funding" not "Praying or funding".

[JonahTorn]

@JonahTorn My point in breaking down what you said was to show that you made a statement that goes against what you later said your point was. So here is a new point, "Less time making comments that you

will later state was not your point, and more funding. That is how a cure is going to come about". This seems more valid than evaluating the amount some one prays when you later indicate that does nothing at all. (as opposed to what you originally posted.)