A rare disease, a loving father

[RareDiseaseContest]

Thanks for the video. We too are trying to aid researchers in their discovery of cures for these children, and we are doing this by supplying them with the research software they need. Together with the CRDN we are giving away a rare disease research system worth $50,000 to the winner of a video submission contest and the rare disease organization of their choice. To learn more about this contest visit Remedymd.com/RareDiseaseContes­t. Good luck!

[ygina55]

Wow, I had never heard of this disease b4 watching this vid... So sad. I so admire the family. It takes so much heart to do the right thing and show up for a person who is ill like that. I have worked in a nursing home for almost 10 yrs and have cared for Huntingtons patients and young people who are on life support as a result of car accidents, and Alzheimers patients... And I see family memebers that come every day as heartbreaking as it must be. God- bless. R.I.P. Lucie.

[wildonessoccerpro]

theres a girl in the nabhorhood who looks just like her

[prinka912]

both of u r such a strong ppl,. i admire u both.

[elecrazy24]

im sorry...im really sorry...

[andrebmag]

looving loooviiiing father!!!!

[robynbenn79]

1 year ago 3 Thank you all so much for your kind words. Sadly Lucie passed away on August 4, 2008. Her passing has left a huge hole in my heart. Altough she was not my biological daughter I loved and cared for her as if she was. I am so hnored to call her my step-daughter and so grateful she was in my life. When she passed in Rick's and my arm's it was the most heart wrenching time in my life. If anyone wished to contact us please write to erbennett@comcast,net. Thank you Robyn Bennett

[firelilly08]

@robynbenn79 i am so sorry for your loss she was a beautiful child. and her story is being heard all around the world her father is a wonderful man who did such wonderful things and god bless you all.

[OuToFtHeBoX2012]

@robynbenn79 i am so sorry!

[mchudi91]

@robynbenn79 i am sincerely sorry for your loss...i just dont know what to say...if it helps, i'll pray for you. stay strong xxx

[hazelennis]

you a strong and a amazing man i admire you greatly

[AspergirlSithstress]

that is soooo sad!

[kammyammy]

this is important to make all aware of this awful disease. we need more research to find a cure. stay strong, my grandson also has Battens

[WagiaTV]

As her brain stops doing normal functions, her heart will eventually stop.

[Remindor]

Wow, that is tough.

[GodIsTheCure]

Blame the vaccines and/or inflammation in the body. Do a search for hyperbaric treatments and oxygen therapies. AMA is a FRAUD. Clue: Where are the cures? Natural alternatives have cures. Why does the AMA fight them so bad, when they don't have answer? Ans: Because cures stop drug sales.

[Kalevala87]

@GodIsTheCure You are an idiot. Batten disease is a genetic condition with no environmental factors. People like you and their love for laughable conspiracy theories are only a hindrance to scientific research and society as a whole. Why don't you go drink a few litres of sea water - hey, it's natural after all! - and rid the world of your presence?

[Bardlettt]

@GodIsTheCure Prayer is not a cure. Iron lungs aren't a fix-all for everything. Nor are tiger penis bones, bee wings, crystals, or any other holistic piece of BS out there. The AMA fights them because people use cheap ineffective shit instead of getting actual medical, scientifically proven help. Are doctors perfect? No, and they will fail sometimes. But the failures help them learn so they can save the next person.

[newcan01]

My heart goes out to you..I know someone whose twin daughters passed away with this horrible disease. Keep strong, god bless !

[groovysherrie65]

I will keep your family in my thoughts. Bless you all, and I am so sad to hear that your daughter passed. She is at peace now. Peace & Love

[kimimaru789]

Thank you all so much for your kind words. Sadly Lucie passed away on August 4, 2008. Her passing has left a huge hole in my heart. Altough she was not my biological daughter I loved and cared for her as if she was. I am so hnored to call her my step-daughter and so grateful she was in my life. When she passed in Rick's and my arm's it was the most heart wrenching time in my life. If anyone wished to contact us please write to erbennett@comcast,net. Thank you Robyn Bennett

[aidanne07]

I didn't know that she has died on till i read your comment. She at peace now, it must be hard on the family i wish them all the best. Rest in peace little one. God Bless.

[txstoryteller]

God bless you; that has got to be sooo hard! Heartbreaking, yet full of hope! FIVE stars!

[Kiko3232]

I'm not talking about love on the generic way, but the love, from one person to another, just like this case in here, I'm sure that can change everything and go through anything.

It's a beautiful story.

Best wishes.

[smileitzzemma]

im srry. U are a great man. U dont deserve this.. u deserve better. best wishes to you and good luck.

[hotshotcandy]

there is only so much u can say to a video like this.....

you are a great man.

[millenbachs]

you are doing a hard job, really well. love and strength to you

[LowdenFamily]

Thank you for putting this out there. I hope more people see what this disease does to our children. - a fellow Juvenile Batten Family