The Benson Family Story
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- čas přidán 9. 04. 2009
- This is the story of the Benson family. Their oldest daughter, Christiane, has Batten disease - a rare, fatal, neurodegenerative disease that currently has no treatment or cure. The mission of Beyond Batten Disease Foundation is to eradicate Batten disease and create a brighter future for Christiane, and all other children affected by Batten disease. To learn more, visit www.beyondbatten.org.
We have two Grandsons that have Batten Disease and both are blind!! We Love them with all our Hearts! God Bless Them
Sad to hear 🥹, no words to say
Just spend time everyday with them
God bless them ✝️
My prayers are with this family and all the families who are having to fight this battle with their child may god bless and be them all may he give them the strength and courage to get through this and may a cure be found for all these sweet precious children I lift them all up in my prayers 🙏🙏
I feel your pain, it is heart breaking to see children suffer.
Hi. I have cerebral palsy. I came across this whilst doing research for my page, and your video is great for spreading awareness of rare diseases. I also try to spread awareness of conditions other than my own. I've shared the link and your daughter is cute.
I shared this video on my facebook to continue my on going fight to spread awareness of this dreadful disease
I cried for Christiane. So sad.....
But I read where they have made great inroads with medication to slow the progress of this cruel disease. I pray they can get it on the market soon.
Millions and Millions o dollars are spent on social programs:
Welfare
Section 8 Housing
EBT Cards
Free College
Free Groceries
Free "Rent"
Free Childcare
etc.
That money *Tax Money* should be used to find *CURES* for children.
Nothing will change unless We the People rise up and demand that our children come first. They are our future.
May God Bless this family.
Love and hope. God bless.
I also have a daughter that has this Batten disease and i hardly get to see her all i hope for is for her mom to snap one day and see i want to be there for my daughter i she brings her every now and then but i wish i could be with her at least everyday.... And the sad part is she has a little brother and sister that love her allot if there is any people out there with this disease im sorry and my prayers are with all you...... God is watching over them....
I know someone with Batten Disease she is now fully blind & is getting a wheelchair. She said she's excited because it's going to be hot pink :) God bless you good people -3
keep on fighting for the cure!
I used to think I had this disease...I wanna spread awareness of this heart-wrenching disease. I know that kids like me with this disease will be cured someday. And I can't wait for that day.
Lots of love,
Ashley ❤️
han pasado muchos años.... y me imagino que diarimente...Su imàgen y millones de recuerdos vienen a sus mentes.. Saben.,..DEJENLA....viajar junto a Dios....
Sad
❤
This is the video which inspired my latest Novel. "A Quest for Skye." Please watch and please help support a cure for Batten Disease and all rare diseases
. We can do it. We will do it.
More funding for children’s diseases research will help find a cure
Isn't there a test to see if you carry the gene before having children?(for
our genetic disease we can get tested at 18)
So cutee
So sad that everything in life is just about the money.
Very btautivie
Is she still alive?
Sabrina Mazzei I don’t know.
czcams.com/video/l3occvIUPW4/video.html this video is from 4 years ago but I don't know about now.