What is Batten Disease?

A brief overview of Batten Disease. This is a brief clip from the documentary that we are producing.

Category:

Education

Tags:

• awareness
• science
• medicine
• disease
• death
• special
• children
• dying
• batten
• health
• care

[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?

[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.

[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.

[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

[SisterMaryTeriyak]

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

[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.

[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.

[JonahTorn]

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