A rare disease, a loving father

Lucie and her brother Conor have Batten Disease, a neurological disorder that, as protein deposits build up on the brain, causes blindness, uncontrollable seizures and a reversal of the mental state. For their parent, Ricky Bennett, a single father, love and encouragement is sometimes the only things he can give them. (Video by Frank H. Conlon) For more info you can visit this website: www.battendisease.webs.com

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People & Blogs

Tags:

• tvjersey
• batten
• disease
• childhood
• genetic
• nj
• star-ledger

[hotshotcandy]

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

you are a great man.

[newcan01]

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

[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

[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

[prinka912]

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

[elecrazy24]

im sorry...im really sorry...

[OuToFtHeBoX2012]

@robynbenn79 i am so sorry!

[andrebmag]

looving loooviiiing father!!!!

[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.

[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