This is one of the most destructive diseases that literally takes everything away from a child until there's nothing left! I love that this family is so desperately doing what ever is in their power to do, not just for their own child but all children currently effected by this disease, along with those undiagnosed or aren't born yet! God bless this family!
Such a great video! My son has cln8... began Project Sebastian years ago by a mis diagnoses to eradicate epilepsy...now we will find a cure for Battens Disease!
Thank you for sharing your video. I had no idea what batten disease is. I will pray for your beautiful daughter. She is just gorgeous. Love from Australia.
Haven't seen her since her video when she was 11yrs old she looks great! I hope they do have something that will stop the progression! It's too late for John S.. But not for this beautiful young lady...
at 0:43 as he said, i found sanflippo syndrome and batten disease are similar, average life is about 15 years old. children develop normally then they cant walk anymore, cant eat anymore, cant talk anymore, cant breadthe anymore, cant remember anymore. nothing is worse than these
I saw a video where another scientist blocked on of the genes in a little girl because it takes both recessive genes for the disease to be active. That may be worth looking into as well. The treatment was tailor made for her.
what a horrible condition....my heart aches for this family...I can't imagine the devastation this diagnosis would bring...I sincerely hope this research will bring new treatments for Christiane and all children who suffer from Battens...
So sad for these poor children. Why don't people care about rare diseases until it affects one of their own? Hmm.... Also, wouldn't genetic couple testing be a lot less expensive, so they would know not to have their own biological children (too risky) and also further into the future, we can "delete" all of the bad parts of someone's DNA so that they never suffer from horrific diseases!
No need to make perfect babies but if we can use the tools we have to save lives, why don’t we. Humans are fragile and weak as is, so a little boost this science and DNA could help. There are just too many people with extreme ideal. It would be nice if we can find a healthy middle ground that can work for the majority.
The father is listing all the bad stuff. The worst of it all that he won't list was the parents ability to know this maybe coming by getting tested and they didnt
Everyone needs salvation here are the words of salvation please forgive me jesus im a sinner come into my heart and save me from my sin I no that you are the savior and I no that you died for me on calvary and I no that God raise you from the dead and you are alive and I thankyou for your salvation in Jesus holy name amen and its important to always ask for forgiveness every night
Some of these comments in this video are ableist. It's horrible to die, yes, however, it's not horrible to be blind, I should know, I'm blind myself. When sharing stories like this, I wish parents would watch their language and how it could offend others with disabilities.
@@gregorymalchuk272 though isnt being able to tolerate lactose a mutation itself that is just very widespread in the west? so, is it the same thing as removing an unwanted genetic mutation?
What beautiful children... Still there should not ever be animal testing..no way ever...If we are smart enough to go to the moo we are smart enough to figure this out with kindness. Animal testing is cruel.
I agree, every animal has a unique personality, so they likely have a soul too. Every life is precious, but we as humans have such a disconnect with nature. We would not be so medically evolved and more humans probably would have died without this testing, but that is the ego of us humans to believe we are the most important species. I personally prefer animals to humans.
I was just talking to my boyfriend about this. It's sad, and there's no excuse. I feel like they need some humans as sacrificial pawns. I know that it sounds rude, but as humans, we (as a collective) do not think about the needs of animals. We think that it's okay to murder them with the blink of an eye. What if the shoe was on the other foot? What if animals used our hair for clothing? Used our teeth as earrings and necklaces, used our skin as something to line their houses with underwater or over water? How would we feel then?
Cosmic kitty that’s not realistic? No one should die that young. Also not sure if you know this, but it doesn’t help JUST humans. The medications also will treat animals. And it’s not even cruel. I’m sorry but cures are more important than anything else. It’s necessary
Parys West If animals could, they would lol. And that’s life. Do you know where we’d be without animal testing? Dead. Horrific deaths. Way worse than this. We would also have no idea how Biology works, either. And animal populations would rapidly be killed off and there’d be human and animal mass outbreaks. For instance, the main animal testing is done on rats. Rats have to be contained, if they aren’t entire species will die off. Same with other species like apes and even cats in some cases Also vector diseases can travel easy to rats from fleas. Meaning any animal who eats that rat will get infected and die. But yes.. let’s save a few rats to sacrifice everything else.. I’d rather have a cure/vaccine over saving a rat
THE101ISNOT 12 you find it funny that a family is raising their child to die? They know they won’t get as much time with her as they thought they would, you’re a horrible person and are obviously sick in your mind!
This is one of the most destructive diseases that literally takes everything away from a child until there's nothing left! I love that this family is so desperately doing what ever is in their power to do, not just for their own child but all children currently effected by this disease, along with those undiagnosed or aren't born yet! God bless this family!
A boy in my class named Cade, well his sister Reese has Batten diesease and I pray for her. She is 14
There are no words... my heart goes out to these ppl.
Such a beautiful girl! Christiane’s story is heartbreaking. But, it is wonderful to know that there is hope
Christiane is a beautiful young lady. ❤️
I read Mila’s story yesterday, feel so sad for these beautiful girls
Watch love kennedy
@@DaughterofkingJesus1993 that story is so heartbreaking...as are all Barrens Disease stories
Such a great video! My son has cln8... began Project Sebastian years ago by a mis diagnoses to eradicate epilepsy...now we will find a cure for Battens Disease!
Chris Velona I sure hope there will soon be a cure!
My cousin is dieing from this did you find cure
Hi my daughter have cln7 thit you find any cure for ncl ? Please let me know. Tha
@@ShyAnn291 Treatments have been evolving...Gene therapy, ERT...
@@shaneforsythe1455 So sorry to hear this. A lot of people are working hard to help all the kids.
She was raising her child to die 💔
So heartbreaking
Kacie Hogarth ikr...
Watch Love, Kennedy
This is so sad my heart goes out to these parents having to watch their children go down hill
Thank you for sharing your video. I had no idea what batten disease is. I will pray for your beautiful daughter. She is just gorgeous. Love from Australia.
Haven't seen her since her video when she was 11yrs old she looks great! I hope they do have something that will stop the progression! It's too late for John S.. But not for this beautiful young lady...
More funding for rare children’s diseases research will help find a cure and save children’s lives
So Sorry 😢Keep on what you're doing & Enjoy every day you have
Hope. Pray. Love. Because miracles never cease to exist .
at 0:43 as he said, i found sanflippo syndrome and batten disease are similar,
average life is about 15 years old.
children develop normally then they cant walk anymore, cant eat anymore, cant talk anymore, cant breadthe anymore, cant remember anymore. nothing is worse than these
This is one of the most scariest things I've ever seen
You cant dream of a future without a dream either momma. She’ll remember you by your voice.
Have you experienced a child with this disease?
That story brought me to tears, may God bless., the family
I saw a video where another scientist blocked on of the genes in a little girl because it takes both recessive genes for the disease to be active. That may be worth looking into as well. The treatment was tailor made for her.
what a horrible condition....my heart aches for this family...I can't imagine the devastation this diagnosis would bring...I sincerely hope this research will bring new treatments for Christiane and all children who suffer from Battens...
Battens disease needs a cure it's like cancer this is awafull we need a cure
Donate to lifesaving childhood diseases research to help find a cure
So sad for these poor children.
Why don't people care about rare diseases until it affects one of their own? Hmm....
Also, wouldn't genetic couple testing be a lot less expensive, so they would know not to have their own biological children (too risky) and also further into the future, we can "delete" all of the bad parts of someone's DNA so that they never suffer from horrific diseases!
Sadly because of the anti-vaccines rise and the abortion debates. That’s all people care about really. And cancer , of course
Peaches Hean it’s because it’s extremely rare. It would be impossibly expensive to get testing done for every genetic disorder.
Of course people think about common diseases more often. It saves a whole lot more people to find cures for major causes of death.
It’s really rare. I doubt they would test for this as opposed to other common genetic defects
No need to make perfect babies but if we can use the tools we have to save lives, why don’t we. Humans are fragile and weak as is, so a little boost this science and DNA could help. There are just too many people with extreme ideal. It would be nice if we can find a healthy middle ground that can work for the majority.
I lost my son to BATTONS at the age of 6.. back 2001 ..😢😢😢😢😢
So very sorry for your heartbreaking loss
The father is listing all the bad stuff. The worst of it all that he won't list was the parents ability to know this maybe coming by getting tested and they didnt
@@bcjb720 prevention is the best cure
🙏🙏🙏🙏
Thats so sad
3:49 4:48 look at her smile, how beautiful she is 🥹❤️
Everyone needs salvation here are the words of salvation please forgive me jesus im a sinner come into my heart and save me from my sin I no that you are the savior and I no that you died for me on calvary and I no that God raise you from the dead and you are alive and I thankyou for your salvation in Jesus holy name amen and its important to always ask for forgiveness every night
Amen
❤❤❤❤
Speak to a Doctor about medicinal Cannabis Oil. Its legal in Australia but, must be through a Doctor It is used for seizures too. It works.
Looks like Mabel from gravity falls.
She is so beautiful...
She's not going anywhere.
She is staying with her wonderful
Parents and brother forever.
ellioshie m If she were an ugly child, would you point that out also? Lol.
@@michellehean4941 no child is ugly.!!
Peaches Hean
No child can be ugly, I believe that every person has something about them that is beautiful
Some of these comments in this video are ableist. It's horrible to die, yes, however, it's not horrible to be blind, I should know, I'm blind myself. When sharing stories like this, I wish parents would watch their language and how it could offend others with disabilities.
It is horrible to have bad eye sight / non at all I hate it I wanna see like normal people
Thank you for this insightful comment
absolute clown
Please seek out CrispR and see if this new thecnology in DNA repair can help you
There is a guy on CZcams named Thought Emporium who cured his genetic lactose intolerance using a gene editing virus with crispr cas9.
@@gregorymalchuk272 though isnt being able to tolerate lactose a mutation itself that is just very widespread in the west? so, is it the same thing as removing an unwanted genetic mutation?
My daughter disnostic last year 😢 she have batten lnc6 she is 5 years old its so sad 😞 how my daughter not speaking again 😢
@bessy I’m so sorry. I know receiving that news is absolutely heartbreaking 💔. My prayers goes out to you. I’m trying to hold my tears in.
@@keciaaskew5166 thanks you its very hard saw 👀 her how she changed 😭😭😭 in a few days she turn 6 years old 😘😭😭😭
You're a strong mother
@@MsAldil thanks you I'm trying to be strong
Thanks you I'm trying to understand
I pray that the god of Israel Jehovah give the people a cure or treatment for this disease
It's a 100 percent fatal
still she is surviving? 🥹
It's dreadful.
Kappa
What beautiful children...
Still there should not ever be animal testing..no way ever...If we are smart enough to go to the moo we are smart enough to figure this out with kindness. Animal testing is cruel.
And how do you think modern medicine has evolved thus far? The answers are everywhere.
A child's life isn't even comparable to an animal's life. Get it together.
I agree, every animal has a unique personality, so they likely have a soul too. Every life is precious, but we as humans have such a disconnect with nature. We would not be so medically evolved and more humans probably would have died without this testing, but that is the ego of us humans to believe we are the most important species. I personally prefer animals to humans.
there is a cure for it now.
No.
There is a medication that slows the progression, but no cure.
Katherine Elizabeth no there’s not :(
False. If diagnosed early there’s a medication that can slow progression of it but it’s not a cure
I get that this is a sad disease but testing on animals is a sick thing to do and theres no excuse for it.
Cosmic kitty oh shut up kids are dying
@@juliadavidson7746 testing on animals is sick. Humans are so entitled. Truth is were all dying. People need to get over themselves.
I was just talking to my boyfriend about this. It's sad, and there's no excuse. I feel like they need some humans as sacrificial pawns. I know that it sounds rude, but as humans, we (as a collective) do not think about the needs of animals. We think that it's okay to murder them with the blink of an eye. What if the shoe was on the other foot? What if animals used our hair for clothing? Used our teeth as earrings and necklaces, used our skin as something to line their houses with underwater or over water? How would we feel then?
Cosmic kitty that’s not realistic? No one should die that young. Also not sure if you know this, but it doesn’t help JUST humans. The medications also will treat animals.
And it’s not even cruel. I’m sorry but cures are more important than anything else. It’s necessary
Parys West If animals could, they would lol. And that’s life. Do you know where we’d be without animal testing? Dead. Horrific deaths. Way worse than this. We would also have no idea how Biology works, either. And animal populations would rapidly be killed
off and there’d be human and animal mass outbreaks.
For instance, the main animal testing is done on rats. Rats have to be contained, if they aren’t entire species will die off. Same with other species like apes and even cats in some cases
Also vector diseases can travel easy to rats from fleas. Meaning any animal who eats that rat will get infected and die. But yes.. let’s save a few rats to sacrifice everything else..
I’d rather have a cure/vaccine over saving a rat
I give it a thumbs down😂😂
THE101ISNOT 12 I don’t know if this is a joke or not but I think you’re sick in your mind
Leo Llama I find it very very funny! 😂
THE101ISNOT 12 you find it funny that a family is raising their child to die? They know they won’t get as much time with her as they thought they would, you’re a horrible person and are obviously sick in your mind!
You are a horrible person this poor girl died she never got to live her life or get married or see the world
wtf is wrong with you