“Will it hurt when my eyes go dark?” YES IM CRYING
@sastina67145 жыл бұрын
Your crying My eyes are just sweaty
@finleybergin43445 жыл бұрын
Yessalyn Villegas watch love Kennedy it’s a true story about a girl with batten disease and I cried and cried
@urtemor99235 жыл бұрын
Thx for spamming
@SirGherro5 жыл бұрын
That part destroyed me.
@thanos14655 жыл бұрын
It’s so sad that they didn’t even know how bad it was and acted like it was fine, I cried too
@ava-fx6ml5 жыл бұрын
"We're raising our kids to die." *that hit me* *_so_* *hard*
@mellovestodraw5 жыл бұрын
i a m c o n f u s i o n isn’t every parents raising kids for in the future to all die? We going to die anyways
@mellovestodraw5 жыл бұрын
The saddest part is these two girls might leave earth sooner than their parents :(
@sunnyboah65755 жыл бұрын
i got so sad when she said that, a tear may have came
@lexxiana88745 жыл бұрын
i a m c o n f u s i o n it really did 🥺🥺
@trishayung69355 жыл бұрын
MelLovesToDraw yes
@tattooqueen84675 жыл бұрын
Raising our kids to die literally broke me down, I’m so so sorry. They’re all soooo gorgeous
@missbrandi21935 жыл бұрын
👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀*hell is your way* 👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀 *dont stay up at 3Am*👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀 -DONT- 👀👀👀👀👀👀👀👀👀👀👀👀*666*👀👀👀👀👀👀👀👀👀👀👀👀
@myszkamiki11455 жыл бұрын
jungkookie need ma cookies omg! Wtf
@blackprincess74695 жыл бұрын
Tattoo Queen why were they raising there kids to die
@DarkStellar5 жыл бұрын
2,000th like, that broke me down too 😥
@armymenstopmotion62625 жыл бұрын
@@missbrandi2193 For your information It is 4:00 AM right now.
@ravenclawgal31045 жыл бұрын
“Will it hurt when my eyes go dark?” That is the saddest thing ive ever heard a child say.
@joy90734 жыл бұрын
😢😢😢😢
@majorieterrazola28423 жыл бұрын
I cried 😭😭😭
@xsargantxshaftx79973 жыл бұрын
No honey it wont hurt 😭🥺 not physically at least.
@kellylamb12813 жыл бұрын
😢
@Blackbrabx Жыл бұрын
YEAH!!😭😭
@sadiearbour22245 жыл бұрын
this is the saddest thing i’ve ever seen in my whole life
@chickendogthehonest28845 жыл бұрын
@Plushie Rainbow may? They wont. That's what's so absolutely terrifying about nature.
@jayanthirathinam80134 жыл бұрын
What happen to her I can't understand?
@bsixnshtns8913 жыл бұрын
@@chickendogthehonest2884 Well dude. You don't need to be so straight to the point.
@eraye36552 жыл бұрын
My son was just diagnosed with this last Friday-
@ChronicRen5 жыл бұрын
She was practicing being blind. That’s heartbreaking.
@Chickitten5 жыл бұрын
666th like kskskskskkss
@-kai-16915 жыл бұрын
@@Chickitten really dude
@michaelastandridge86175 жыл бұрын
Either that or the bright lights make her sight even worse and they are trying to help slow it
@justinoiler97495 жыл бұрын
@@Chickitten Danielle pullin Jessica massey
@mickeyb44415 жыл бұрын
No, I think she's already losing sight and light sensitivity could be what the blindfold is for....
@karinne99335 жыл бұрын
I'm an atheist, but when the mom said "we're raising them to go see Jesus" my heart broke
@watchergirl4christ5 жыл бұрын
That was Jesus knocking at the door of your heart, let Him in.
@michellehean49415 жыл бұрын
@@watchergirl4christ No, it was no one "knocking at the door of your heart"; Kadre W (an atheist like myself and my husband) is is obviously a compassionate non-believing person and literally anyone with basic human emotions and feelings would feel touched by the mum's statement about "raising them to go see Jesus" and also the entire family's and congregation's dedication to raising their children in a safe, clean way, and teaching their kids what they believe, fantasy or not! Please, all of you religious people like Priscilla Pope, STOP preaching and harping every two seconds at every non-religious person! For once in your constant finger-pointing and judgmental lives, STOP injecting your gods and your jesus's into every single comment, mind your own bloody business, and acknowledge that not EVERYTHING revolves around YOUR beliefs!!! Oh, by the way, Priscilla Pope, you have a VERY cool name. And I am being NICE, not sarcastic, I seriously think that your name has a lovely ring to it and just rolls off the tongue. I do want you to have a lovely day, no matter what you believe. Take care, everyone!
@danielwalker23815 жыл бұрын
He is real. You just have to be humble, and it’s your choice to believe or not but if you talked to my mom you wouldn’t doubt it for one second. Also, she’s not trying to be relentless in any way,she’s just trying to have people to be truly happy. She could have said it a bit differently but she’s trying to do what is right. I’ve seen religion’s power in my life and without it I would either be mentally insane or dead...I had derealization anxiety a year ago and overcame it in 2 to 3 months and I thought I would NEVER come out of it. The only thing that ever helped me was crying and being with family and even I thought they weren’t real. I even believed that my mom wasn’t real and that she isn’t really my mom even though she is and I love her with all my heart. I could barely pray and do anything and even then I felt hopeless that I could never feel that anything was real and somehow it just started to go away. And even though I still battle with anxiety I’m still trying to be happy ;_;
@jenniferlarson44915 жыл бұрын
Michelle Hean please don’t be offended, only understand that a big part of being a Christian is trying to share the love that I feel with those around me, (love my neighbor). I feel selfish if I keep to myself how blessed my life is because of the relationship I have with my Jesus.
@cocatfan5 жыл бұрын
@@watchergirl4christ Oh please.
@maddyy16405 жыл бұрын
"And now I can die" That got me.
@jasmineangie46525 жыл бұрын
maddyy yeah. Me too. That’s when the tears came down.
@Amandagaj5 жыл бұрын
i broke down when i heard that part
@maddierow25 жыл бұрын
Sobbing!!
@lexxiana88745 жыл бұрын
maddyy right 🥺🥺🥺
@alexisodd59623 жыл бұрын
That’s just…The saddest thing I will ever hear out of a child
@truegemrn4 жыл бұрын
These parents complete each other’s sentences. So sweet. I’m so sad for the diagnoses of these beautiful girls.
@frostbite375610 ай бұрын
And they complete the bad gene strands
@izzyhall20835 жыл бұрын
"Were raising them to go see Jesus." That hit me HARD
@sofiab.91294 жыл бұрын
I cant imagine the pain... 😥 i hope so badly that their Jesus will take care of them and i hope there is a heaven. ❤
@TheNo1Atheist13 жыл бұрын
@@sofiab.9129 Your God did this to these poor girls. You should be cursing him not praising him. Thank you to the medical team who undid God's dirty work.
@sofiab.91293 жыл бұрын
@@TheNo1Atheist1 i dont believe in god....
@TheNo1Atheist13 жыл бұрын
@@sofiab.9129 Very glad to hear that.
@kimwao8452 жыл бұрын
And Jesus is always watching over them.... Omg im in 😭 tears
@DeepSeaHorror5 жыл бұрын
"We're raising our kids to die" wow, literal chills. These people are going through something almost inimaginable, and yet they keep living. I'm not religious myself, but it makes me so happy that they've found a community that helps them like this.
@emilybh62555 жыл бұрын
That sad thing is none of it is necessary. It is only happening because they "believe" in the propaganda that the powers that should not be dish out. Nature - NOT MAN - has all the answers. Find a good herbalist/naturopathic doctor to help change the diet and detox and regenerate the bodies of these girls.
@irishrosa7035 жыл бұрын
@@emilybh6255are you a doctor???.. why can't you just be happy they are not alone they have people around them.. when someone is talking about their children dying dosnt matter what faith someone is as long as their not alone....
@SeerWalker5 жыл бұрын
Emily BH you disgust me
@pennyachour85955 жыл бұрын
Irish Rosa Where do you think medicine comes from? The botanical elements are stripped and synthesised by laboratories, man plays god with gods natural medicine, Have you not seen what medical marijuana can do in the right context, I have seen a small boy come out of a potential fatal fit in seconds by having the oil rubbed on his feet, 100 seizures a day reduced to one or two, I have seen a man with severe stage Parkinson’s return to normality after only a few drops on his tongue. God given, THATS RIGHT, GOD GIVEN!
@pennyachour85955 жыл бұрын
sophie YOU ARE THE ONE BEING DISGUSTING, AND NARROW MINDED. Where do you think medicine comes from? The botanical elements are stripped and synthesised by laboratories, man plays god with gods natural medicine, Have you not seen what medical marijuana can do in the right context, I have seen a small boy come out of a potential fatal fit in seconds by having the oil rubbed on his feet, 100 seizures a day reduced to one or two, I have seen a man with severe stage Parkinson’s return to normality after only a few drops on his tongue. God given, THATS RIGHT, GOD GIVEN!
@doglover55245 жыл бұрын
I am not religious at all but I found it great that their family could find community through their faith and that their faith kept them going! Sad but touching story.
@simplyunique78285 жыл бұрын
So true
@IZaubermausI5 жыл бұрын
I don‘t believe in God - I believe in people with a big heart! These people are helping you through hard times!
@hareecionelson58755 жыл бұрын
I don't know, I felt pretty sad that they felt only religion could provide community and support, and I was annoyed that society had not equipped this family to cope with their situation to the point where God was the only place they could turn to, especially since the father is angry with God and confused. Society needs to do better.
@jenniferlarson44915 жыл бұрын
Hareece Thorogood but society has provided community and support to this family. Just because they are religious doesn’t remove them from society.
@hareecionelson58755 жыл бұрын
@@jenniferlarson4491 the mother said she doesn't know how to cope without God. This should not be norm, but it so often is. Society had not equipped the family with a way of dealing with these situations. Suffering is not the monopoly of religion, but it is treated as such, even by some atheists.
@uafbound5 жыл бұрын
“We are raising them to go see Jesus”... I work in Pre-hospital and Hospital Pediatric Emergency Medicine in Memphis, TN. I care for St. Jude patients daily. I have seen many beautiful children go. That is quite honestly the most beautiful quote I’ve ever heard a parent say. Children are courageous when faced with death. They must see a beauty in life and death that we don’t see. But I love pediatrics because of their amazing resilience.
@isabellew39045 жыл бұрын
Thomas I’m in Memphis too! St. Jude’s is a great place and I thank you for your work there. It must be very difficult being in that environment but so beautiful at the same time. A very good friend of mine had leukemia as an infant and she wouldn’t be here without you guys!
@uafbound5 жыл бұрын
Isabelle W, I actually work Full-time for Memphis Fire Department and Part-Time for Lebhoneur Children’s Hospital. We have a treatment agreement with St. Jude for all of their patients who are needing emergency treatment.
@isabellew39045 жыл бұрын
Thomas wow. What a small world. My mother used to work for Lebhoneur when she was in college. That’s amazing. Keep doing your good work.
@ashleythomason17695 жыл бұрын
Thomas wow you live so close to me! Weird. Lol 😂
@MienemLeben5 жыл бұрын
My husband worked at Children’s in Pittsburgh as a physician and I remember all the heartbreaking stories he would tell me. I do agree that is a beautiful quote! I could never imagine what parents go through, no amount of education can prepare one for what they will see in pediatric care.
@nixichu61735 жыл бұрын
“ And now I can die” Noooooo why must the most beautiful people have to go 😭😭😭😭😭😭
@3d_young_joseph4 жыл бұрын
@Mr. Moon She means beautiful by beautiful souls, not faces
@coraline_cat1434 жыл бұрын
@Mr. Moon we shouldnt have to explain it. . .
@astrinymris99534 жыл бұрын
Batten disease seems to strike the most kind and compassionate people. :-(
@_JustJoe4 жыл бұрын
Why did this beautiful comment start an argument? Some people take sweet things and turn it into negativity.
@xsargantxshaftx79973 жыл бұрын
@Reoz ... this is such a beautiful way of explaining it I'd use this to help a child understand why people have to leave us..
@S0R0X5 жыл бұрын
I can hear the pain in her voice it’s so sad
@emilyr65104 жыл бұрын
Skysune I know this is serious but OMG ENTRAPTA YASSSS I LOVE THE PROFILE PIC
@S0R0X4 жыл бұрын
LapisLazuli 1234 YES
@TheMusicPinkLover915 жыл бұрын
"We're not raising them to be a good mom, or engineer, or a good member of society like, we're raising them to go see Jesus. " I loved this part. It's unbelievable how a child like that can teach you so much about life. We complain so much about the smallest things and these kids with this condition are happy the way they are ❤️❤️❤️ I'm so happy that they're happy! :)
@Scotty26505 жыл бұрын
That part really got me 😪
@themotivationauts29895 жыл бұрын
@Angie Gomez What are they supposed to do? Curse and curse for something they have no control over? Or live life in somewhat comfort that you child is enjoying life somewhere still.
@erichestnut95365 жыл бұрын
I loved this phrase so much. I love it so much. Jesus should be who we're living our life for.
@crowtein61045 жыл бұрын
Angie Gomez who said they aren’t going to grieve?
@georiejakes17545 жыл бұрын
Is the part i broke on
@duai70905 жыл бұрын
I’m a Muslim and I love how they are so religious I’ll pray for them I swear
@myheartwillstopinjoy81425 жыл бұрын
We should pray for them, it's Ramadan
@duai70905 жыл бұрын
Funny Bunny ||| yes girl let's pray for them in Tarawih prayers ♥️👏🏻✨✨✨
@myheartwillstopinjoy81425 жыл бұрын
@@duai7090 yes girl Ya Allah help them 👐 say ameen 💕
@TrueBeelzebub5 жыл бұрын
I hope they will be in peace
@narjisel84305 жыл бұрын
Insha Allah she Will be okey, I pray to Allah to make it easy for the girl, He is Ashafi.
@juliakercsmar65875 жыл бұрын
Dang, i didn't plan on crying before classes this morning.
@acupoftae38875 жыл бұрын
Same
@lilistyevko11925 жыл бұрын
Szerencsére én hétvégén láttam 😭
@KitanKate5 жыл бұрын
my friend died from this when she was 7, she used to play like a normal kid then she had seizures and had to wear head protection, she then was off school and cam back in a wheel chair and couldn't speak.
@hopegoodness96714 жыл бұрын
I know these are childern but every day there is no promises of tomorrow so you must truressur your time mint by minutes hour by hour day but day nosorrow no tears only the moment with love hugs and smiles to remember for the years if this sounds like a poem it is because it comes from God to your ears
@Dynamatrix20003 жыл бұрын
Why are you trying to bring me down?
@babygoose87165 жыл бұрын
If I knew that I carried those genes, I would not have any children at all. I wouldn’t want to take that risk. This poor family. I couldn’t imagine.
@deleahperry22845 жыл бұрын
She probably didn't know until she had kids, so having kids is always a risk. You just have to take the chance and love them no matter what happens or what path they choose in life, because in the end they are your children and you should love them for who they are and not worry about what will happen, just live in the moment. Raising kids is hard and it's even harder when your kids are sick, and when your a sick kid it's scary to see your parents worry about what is going to happen.
@BlueBaeChai5 жыл бұрын
She did have a lot of kids. I’m not sure when they found out. But I’d definitely stop having kids once I knew. It’s not right to bring these babies into the world knowing their life will be miserable
@melonmelon85725 жыл бұрын
I was recently diagnosed with a rare genetic disorder, we don’t know how it will effect my children if I one day choose to have my own. So until I know there is a zero percent chance of it being passed on I plan on adopting. Unfortunately genetic testing is extremely complicated so it’s rare to know you are a carrier for certain illnesses until that illness presents in your child, and then it’s too late.
@MagMaybe5 жыл бұрын
her 2 carrier daughters should absolutely test their future babyfathers before trying for any babies. If they both have gene, having kids is too risky.
@Peacock__4 жыл бұрын
@@MagMaybe They could probably go for a selective ivf treatment, where they remove diseased embryos
@susannak17555 жыл бұрын
I'm not Christian but I can see that these people have a personal relationship with God. Like God is so close to them, they can feel him and I think that is a real blessing. I'm crying.
@jadamcleod37015 жыл бұрын
Susanna K I’m Christian
@hihi-lu4mh5 жыл бұрын
It said they're Catholic btw.
@hihi-lu4mh5 жыл бұрын
@@jadamcleod3701 I'm Christian too
@steflondon885 жыл бұрын
I pray you know God's love too! Deeply and that it give you peace and joy
@opalfishsparklequasar86635 жыл бұрын
He is close to you, too. 🌹
@mias26623 жыл бұрын
I had the privilege of being a caregiver of someone with this disease. She was one of the sweetest and most kind people. It was a busy house and we struggled to get everything done to care for our clients but I always worked to find extra time to let her pick her outfit (purple was her favorite) and I would braid her hair, paint her nails and do her makeup even though she couldn't see any of it. She always wanted to talk boys and wanted to get married some day. It broke my heart knowing that wasn't possible for her. She could totally kick my butt at cards though! This is such a horrible disease 😞 it hit me so hard seeing those girls practicing for becoming blind though I understand the necessity of it. I hope they find a cure some day
@mimilooney5 жыл бұрын
I'm a Muslim and today is the first day of Ramadhan, and I pray and hope and wish that this family can go through with this with strength and the girls can have more and beautiful memories to come, and please please GOD, let there be a cure for this illness.
@fireplug16105 жыл бұрын
yahmik allah
@loveoneanother98105 жыл бұрын
I pray you accept Jesus as your Lord and Savior
@kumoric74145 жыл бұрын
Jessica's Art don’t force your religion on someone when they already have a different belief
@loveoneanother98105 жыл бұрын
@@kumoric7414 knowing Jesus isn't a religion it's a relationship. Jesus is the only way to the Father. I pray He opens your eyes to this. He's coming back soon and every knee will bow and every tongue confess that Jesus Christ is Lord.
@rozurido5 жыл бұрын
Jessica's Art You aren’t understanding their point. When someone says straightforwardly that they are a certain religion and you try to convert them without a second thought on how they feel about it/their spiritual relationship with their religion, it’s frustrating. I understand that you don’t mean anything harmful but as an atheist who comes from a family of Christians/Catholics who try to force religion on me, having someone try to convert you when you believe in something else is fairly annoying.
@whatevermaann5 жыл бұрын
I’m in tears, “when my eyes go dark” it must be so scary to wait for that to happen, fully expecting it and just waiting
@oliviasabella90344 жыл бұрын
I thought about that too. I couldn't imagine just waking up everyday and having to deal with the constant dread of going blind. And she's so young, she shouldn't have to deal with that :(
@jayanthirathinam80134 жыл бұрын
What happen to her?
@daylightbright76753 жыл бұрын
Kind of like Retinitis Pigmentosa. But with RP most patients are also otherwise completely healthy, so they just have to adjust to living life with vision loss. Not an easy thing to deal with by any means, but they don't have to worry about cognitive decline and all the other horrible things these poor girls are going to go through. It's the dementia that makes me most sad. These girls are still children and are already actively losing all of their memories and everything they ever learned. They never had a chance. There are no words for how completely heartbreaking that is.
@honeypots87875 жыл бұрын
"I'm angry at god, I'm confused, but I don't know where else to go" That just...broke me. Physically. Mentally. I just dropped my phone, laid down and just let the tears fall.
@clumsybugg4 жыл бұрын
@Mr. Moon Idk if you knew this, but there's this thing called empathy. People who care about others especially in stories like this, it is very common to get upset or cry. Telling people to "get a grip" because it isn't about them is honestly insensitive to how other ppl feel things. Just because this isn't happening to the person first hand it still doesn't mean they can't have emotions towards another persons struggles in life. It's an obviously sad video, and I honestly question people who don't get upset seeing children suffer.
@krisymac35144 жыл бұрын
@Mr. Moon wtf is wrong with you. On almost every comment I see a replies from you and it's always rude.
@MaruskaStarshaya4 жыл бұрын
unlike the god science could give an answer and also a treatment. A CRISPR could be a cure if they will not hesitate.
@abc-ju5oq4 жыл бұрын
@Mr. Moonempathy? ever heard of that?
@krisymac35144 жыл бұрын
@Mr. Moon okay, but when was the first person ever rude
@MillsRepDom5 жыл бұрын
i cannot imagine this. This is such a beautiful, loving family. It breaks my heart to see children facing such a catastrophic disease :( I love how strong their faith is.
@robynsmith41645 жыл бұрын
I truly got goosebumps all over when she said, “we’re raising them to meet Jesus...” I think those girls could not have been born to better parents! God bless❤️✝️😇
@kmations40495 жыл бұрын
I feel so bad for them but im glad they are still living on and staying with their kids and loving them all the same
@yourstrulykelsey5 жыл бұрын
“ we’re raising our kids to die ” felt.
@angelica18395 жыл бұрын
"We're raising our kids to die" That hit me real hard. I feel so bad. I hope The Angels guard you through out the bad times. Good bless
@miaryder7125 жыл бұрын
God bless them, Cecilia is in 4th grade and lily is in 3rd, they went to my elementary school,I’m older now but I would say Hi to her in the halls and she would smile and I would always smile back😊☺️
@Rybread9734 жыл бұрын
Thats sweet ☺
@chimkuroo64965 жыл бұрын
Why is the screen getting blurry??? Oh w8 its just me crying😢😢😢
@Stinkalink1235 жыл бұрын
park chim chim SAME 😪😪😪😪
@erichan25575 жыл бұрын
bruh armies are every where. lemme guess. is jiminie your bias?
@melissaburdick82985 жыл бұрын
Yah this made me cry too. Wow.
@mellovestodraw5 жыл бұрын
When you cry it doesn’t get blurry ??
@sandhyagoyal77275 жыл бұрын
@@mellovestodraw it does sometimes
@jayme23305 жыл бұрын
"Now I can die." I'm actually tearing up rn 😔😭❤
@edenmccrystal71215 жыл бұрын
I believe the Dr should have explained what CLN3 was to the parents in layman's terms.
@smiavsvs36775 жыл бұрын
Yeah, that gets me, too. This isn't the sort of diagnosis you deliver over the phone. Nobody should have to Google to find out what their doctor's referring to. You call the family, tell them you need them to come in as soon as possible, and deliver it as gently as you possibly can, with mental health professionals on standby to help them cope.
@mylittlehyrule5 жыл бұрын
@@smiavsvs3677 I agree. Primary Care doctors are really bad for things like this.
@smiavsvs36775 жыл бұрын
@@mylittlehyrule Mine isn't, (she had me make an appointment before she would even discuss some blood test results that said I was anemic) and others I've had in the past weren't, so I wouldn't paint all primary care physicians with the same brush, but the ones in this story certainly dropped the ball. None of that should have happened over a phone call....
@lucillem77065 жыл бұрын
It shouldn't have been the doctor announcing this, it's the genetic counsellor's job (i want to become one). They'd have a meeting in person and the counsellor would be the one explaining what the disease "includes" and what kind of support they can get.
@valindro85634 жыл бұрын
What is layman’s term is it where there not so blunt because if so the doctor has done that to me before
@familerummel79463 жыл бұрын
“And now I can die” no child should ever have to say that. I am so incredibly sorry and I hope they find a cure for your girls.💕
@zairew39045 жыл бұрын
This breaks my heart 😔 these girls have two of the most strongest parents I’ve ever seen. May god bless these beautiful people ♥️
@jadatownes5 жыл бұрын
When you quoted that your daughter said "and now I can die," I lost it. Sweet, sweet baby. That broke my heart. Prayers for you and your family and wishing you many happy, fun memories!
@briannataylor54055 жыл бұрын
Ugh gosh, this stuff really breaks my heart. Blessings to your family. Makes me appreciate life a little more with each video I watch.
@Shenayerx965 жыл бұрын
My heart goes out to these parents. How strong they have to be to wake up every day knowing what they know :(
@paigerenee41735 жыл бұрын
As a Christian, it actually makes me very happy to see non religious people being touched by this family’s faith, love, and their community. It’s one of our goals as Christians to accept everyone and spread love no matter what❤️
@maggiefollett636 Жыл бұрын
What an extraordinarily naive, condescending and bigoted comment. Do you honestly think that people from other faiths/denominations/different belief systems don't feel the same level of love and compassion?
@paigerenee4173 Жыл бұрын
@@maggiefollett636 I'm not going to respond to any of the points you made, but I'm just gonna say I'm sorry for you because only a very unhappy person could look at the comment that I made and try to twist it into something bigoted and hateful.
@Aesuuki Жыл бұрын
@@maggiefollett636 How exactly? Coming from an athiest I agree that your comment seems so unnecessarily agressive
@Arian.Augustin Жыл бұрын
@@Aesuuki I am also an atheist, I completely agree with you. Paige Renee your comment was beautiful. I will also never understand why people feel hate when someone say "bless you" - when my son passed in 2017 I accepted every well wishes in every shape and form. Every single word I took close to my heart. Don't be a fool when people are only trying to be kind. ❤️
@Arian.Augustin Жыл бұрын
@@maggiefollett636 She didn't say anything wrong. Read the room, you're the one who needs to check yourself. I hope you find the help you need.
@Koda_Grey4 жыл бұрын
I was friends with three siblings who passed from this disease. It was awful to witness their regression, but I am so blessed to have gotten to know them.
@mandymoore58565 жыл бұрын
This just broke my heart into a million pieces 😭😭
@aspenrobinson87975 жыл бұрын
You will forget in a day and go about your life. There needs to be funding .
@mandymoore58565 жыл бұрын
@@aspenrobinson8797 actually I haven't forgot about it in a day and went on with my life. What's the point this comment? Of course there needs to be funding. This is horrible.. Who wants thier children to die! No one!
@あけみ-w4k5 жыл бұрын
@@mandymoore5856 I agree with you
@melissawhitson28215 жыл бұрын
This has me in tears. What's beautiful about it is their faith and the love that they have. My heart goes out to you guys.
@cmcmahon85515 жыл бұрын
Please look into the Gray Foundation!!! Looks like they are having success with stem therapy, I think. Please look them up if you haven't already!?!
@natalieo.68745 жыл бұрын
Yes please look them up they've raised almost 6.5 million dollars to go towards curing it.
@LupusIsABadDiagnosis5 жыл бұрын
@Gina Davis Gina you clearly have no idea how any of this works.
@breonawarren15075 жыл бұрын
Gina Davis You could theoretically cure genetic disorders
@terrysprouse46425 жыл бұрын
@Gina Davis not for these two.. But for those to come.
@celticdragon5445 жыл бұрын
@Gina Davis they may not be able to cure it, but so many medical discoveries are being made and maybe they can put it in remission or slow it down and it will provide time for a cure. You never give up hope when it comes to your kids :) you move heaven and Earth regardless of statistics and fight for them regardless...if no cure exists you fight, fight, fight. Hope it's in enough time for your kids but if not then you fight to prevent other families and kids from experiencing what you did or your kids did. It's never lost cause when a human life is involved especially a child.
@niggathesixpath13765 жыл бұрын
“Now I can die” Bruh that’s just broke me into pieces. We take life for granted and look at this kid it’s just pure love.
@jadedmind76344 жыл бұрын
My 5 year old daughter has the same flower dress with the brown belt that all the girls had on in one of the pictures and seeing that made me just feel like this could of been me or anyone’s little girls. My heart absolutely broke when she said raising them to die. Oh wow, that’s just so horrible. I’m glad they haven’t lost their faith. ❤️
@jonyahraus42835 жыл бұрын
So touching. These parents are doing everything right. ❤❤❤
@seifalah06265 жыл бұрын
I'm not familiar with the disease. However "neuro-degenerative" speaks for itself and is absolutely heartbreaking!!
@QueenJosephine855 жыл бұрын
I'm soooo glad you decided to share how Cecelia felt when she was anointed. I immediately felt that in my spirit and the tears started to flow! You are awesome parents! Continue to have faith and raise your children in the ways of our Lord!
@jewelhaines88422 жыл бұрын
My daughter was born with Cornelia De Lange syndrome. She's mentally disabled. She has a very difficult life. I have sometimes questioned "Why My child, God"? It breaks my heart to see my child suffer and know I can't do anything to help her. My heart goes out to these parents, and their beautiful children. ❤
@carolroberts8930 Жыл бұрын
So sad about your daughter. I hope you are raising her in the same way, "...to go see Jesus." Children often amaze us with their spiritual perception and understanding. May you both be blessed.
@lydiakies90534 жыл бұрын
You are teaching your daughters to live *in* and live *with* grace during the time they have on this planet. You're doing awesome.
@LittiahKnightingale5 жыл бұрын
I'm crying so bad I lost my baby before I could even hold him I can't imagine how hard this is with not one child but two it's heartbreaking. My love goes to this beautiful family
@LittiahKnightingale5 жыл бұрын
@@NOLCPBXUDS thank you 💜
@breeze-bites5 жыл бұрын
May your baby Rest In Peace. They will be forever missed.
@samw37205 жыл бұрын
That must be insanely hard to go through. Yes you are raising them for inevitable death but you are raising them to be happy. To live what life they have the best they ever can. To be loved, to give love, and to feel as much love as they can. Rasie them as your kind and beautiful kids. Because that's what they are.
@brittneymoreland16105 жыл бұрын
Thank you guys so much for sharing your beautiful daughters with us. May God abundantly bless you all and give them all the desires of their heart, and yours, before calling them home 💖
@1n5tant_Ar50n5 жыл бұрын
This is so emotional. Those parents have so much strength, and so much love, and so do their kids. Bless them all.
@tiahawksworth71735 жыл бұрын
im literally crying just watching this i cant imagine how they are feeling as parents but its so heartwarming to know that the girl are going to be safe and happy and that they trust their faith to guide the way xxx
@AG-ez9by5 жыл бұрын
oh those tears.. thank you for sharing your story. Your faith in Christ is absolutely beautiful and touching. Your family would be in my prayers. Happy Good Friday and Blessed Easter ♥️ "Do not grieve, for the joy of the Lord is your strength"
@gymnastsquad74065 жыл бұрын
A G please talk to me
@mayggrome5 жыл бұрын
The joy of the lord gave them the disease. Yea thats the fucking reality
@bpgk20075 жыл бұрын
God brings comfort now for all and a promise for the future. Isaiah 35: 3 "Strengthen the weak hands, And make firm the knees that are shaking. 4 Say to those who are anxious at heart: “Be strong. Do not be afraid. Look! Your own God will come with vengeance, God will come with retribution. He will come and save you.” 5 At that time the eyes of the blind will be opened, And the ears of the deaf will be unstopped. 6 At that time the lame will leap like the deer, And the tongue of the speechless will shout for joy." Stay strong!
@naomialadenoye11835 жыл бұрын
This was powrfull
@probro82845 жыл бұрын
brainwashed?
@netty12215 жыл бұрын
Omg this was so heartbreaking but so beautiful at the same time. The love they share and radiate. Their faith in God and they will have a place in heaven eternally what God has promised. This life here for all is short like a vapor. Tomm is not promised to anyone sick or healthy. Thank u for showing what love really is and giving the glory to God is amazing. Your family is amazing. I pray for your family to get through these hard times I have children and I have learned what real love is too through them.
@Dumskeed5 жыл бұрын
I don’t believe in god personally, but my heart goes out to these people. It’s heartbreaking to hear a parent say “we are raising our kids to die.” I couldn’t possibly imagine this pain.
@libertyann4392 жыл бұрын
I don't either but I can't begrudge them any comfort they can find.
@hannaharsenault20255 жыл бұрын
When the mom said « we are raising our kids to go see Jesus » I cried and I still am, I feel so bad for you guys ❤️😞
@brendabaum64425 жыл бұрын
Thank you for sharing your story. As a parent it took my breath away. Your beautiful girls! I will pray for your family.
@lytea51755 жыл бұрын
*“Is it going to hurt when my eyes go dark?”* At that point I just got a rush of mixed emotions and started sobbing.
@abbigailbaum69155 жыл бұрын
Good said " Bring all the little children to me". Lost my baby sister way too early for her time. But the one thing she kept saying before she passed was " I wanna kiss baby God" ( Jesus). And my Mom kept saying one day when you go to Heaven you can kiss baby Jesus. And none of us knew that night would be the night that she would pass. And I know that she went peacefully and she knew that all her suffering and pain she had endured on Easrth were going to be over and she was ready to see the face of Jesus
@alizeica5195 жыл бұрын
My best friend's two year old sister died around a year ago. She *Is* such a precious soul and she is missed but Naomi is able to see God now.
@abbigailbaum69155 жыл бұрын
@@inverteddoesyoutube9268 Thank you so much. You just made my day and I'm sorry for making you cry.
@leahsmith50265 жыл бұрын
This made me cry. I really hope these 2 little girls live their best lives as long as they can.
@jessicasteenbergen82462 жыл бұрын
She might be an Indigo child. Beautiful family, I wish you good luck and all the best
@90smritime5 жыл бұрын
Raising them to go see jesus !!.. i am a Hindu n yet i believe this is the most noble deed a human can do.. not call it death.. But say going to see Jesus! I just hope u be successful in ur aim of making them so good spirited that they do meey Jesus up there n receive full Moksha !! God bless thy holy spirits !
@midnightat3am5 жыл бұрын
Cecilia is a beautiful soul, pls make a book dedicated to everything she’s said. A truly poetic soul. Her words have a way of touching ppl in the purest of places in their hearts. Someone needs to hear her, she is an angel.
@Chanceisafoodie5 жыл бұрын
“We’re raising our kids to die” that hit me so hard.
@Alexandra_L_K5 жыл бұрын
I wish this family all the comfort and peace in the world, wether that be from religion, community, or just each other. Just having the courage to accept the inevitable in a situation like this is something I can't even fathom.
@janicebradford97805 жыл бұрын
You have such beautiful children. They are already little angels. God bless your family. I know you are being blessed and watched over. I wish I had a church that would be like yours with that kind of closeness. I am so happy they are there for you.
@skincarejunkies97153 жыл бұрын
I don't know why this show up on my KZbin suggested videos ,. But I am glad to watch this , from Morocco I love to say to the parents May Allah give you strength to raise these beautiful girls , and always remember only God knows when and where are we going to die , so don't be obsessed with this idea of death , live your life , u Never know . Who's the first to leave this life , God always has his own plans , whatever happens it's gonna be the best for them for sure , be strong💞 , each of us has a test of patience to pass , and I am sure you will pass it successfully , I see so much faith on your beautiful family , I will always pray for your daughter whenever I remember 🤲wish I was there to hug you so strong ❤️
@5H4TT3R3D4 жыл бұрын
I started bawling after this video ended. Just the thought that these little girls aren't going to make it past their 20's is so sad. They will never get to experience things. Sometimes we take that all for granted, y'know? The fact that we have all these things, and there are rare people like this that won't get to experience the things we do. Also, the fact that she was so okay with dying hit me so so hard. She knows what's gonna happen, and she's ok with it. I can't imagine what it would be like knowing that I am living just to die after I reach the middle of my life. They aren't going to get to be mothers, or have as many connections. I'm going to miss these little girls I've never even met! These little girls only exist for other people. I'm sorry if you read this whole comment just about me ranting over basically nothing.
@daniellemorriss76675 жыл бұрын
That was the most sad but absolutely inspiring story I have ever listened to. Without faith in a loving and merciful God and a more beautiful place to go to beyond this world then their is no solace in pain like you guys are going through. Your faith and trust in God is beautiful and an absolute gift to your children. God will reward you for your faith and trust in him. I pray for you and your families strength through this difficult journey. You all are a beautiful inspiration!!!!
@cadeelavscats-gotamore20815 жыл бұрын
e
@babybug1975 жыл бұрын
"And now I can die" this really got me 😭😢😭😢😭😢😭😢😭😢
@erikawordon17814 жыл бұрын
Jon and Beth - what special parents May God grant you wisdom as you raise your beautiful girls and above all His perfect peace that surpasses understanding
@jamietodd16755 жыл бұрын
Omg, I’ve never cried so hard! This family is absolutely amazing
@vlado-fz7yh5 жыл бұрын
One day I want to expand the researches on rare genetic diseases and I am going to help families like this
@SunriseDawn5 жыл бұрын
Add Morquio Syndrome to that... Morquio /MPS IV-A, MPS stands for MucoPolySaccharidosis. It's an enzyme deficiency that causes metabolic storage issues and the chronic & progressive deterioration within All Systems of the body (Circulatory/cardiac, heart murmur, high blood pressure, mitral valve regurgitation, neuropathy/pins & needles, edema in lower legs, etc., Respiratory: lungs, Orthopedic/skeletal bone growth & stability: dwarfism/achondroplasia, deterioration of joints, malformed bones, spine instability (paralysis if untreated by spine fusion surgery) and eventual permanent wheelchair use due to knock-knees, spinal deformities, hip dysplasia, "pancaked"/flattened bones within feet and ankles, roto-lateral scoliosis (spinal column resembles DNA Helix shape twisting upon itself), etc. Sight/Vision: progressive corneal clouding/blindness, Hearing: neuro & sensory loss of hearing leading to profound hearing loss, deafness and
@ScarlettKriss5 жыл бұрын
I will pray you find cures like a superhero!!
@օօղհíժ5 жыл бұрын
🙏🏽
@ghosticmystic5 жыл бұрын
Do it. Someone needs to. I'm studying to become a paramedic to work as I earn a degree in genetics to work on studying rare diseases. Like this. I have a rare disorder that no doctor can even say how I got it! No doctor can say "its genetic, this is the malformation" nor can they say "you were exposed to this" no one can answer... it makes me angry but I'm lucky... I got very lucky, mine didnt progress like others. I'm still able to function and talk... others not so much... people need to study genetic disorders, help comfort and care for them.
@owmystomachhurts5 жыл бұрын
Best of luck ❤️
@awkwardmanatee48924 жыл бұрын
Watched a child die of this disease last year and it was the worst thing in the world. Sending my love to this family.
@keciaaskew51664 жыл бұрын
This is one of my most favorite and sad 😢 videos ever. I can imagine what these parents are going through. If I had a child that had this terrible disease I would definitely break down just like this mom. And the oldest girl practicing being blind is extremely heartbreaking. I even watched Kennedy’s movie very heartbreaking and emotional.
@janicelarsen82924 жыл бұрын
This has to be one of the most heartbreaking stories that I have heard. Bless you Mom and Dad. Those little girls are so sweet and so smart. I'm at a loss for words except bless you bless you
@Gamermom20225 жыл бұрын
My heart goes out to your beautiful children and to your whole family.
@JudithBisson5 жыл бұрын
that's a sad story, sending love and peace to the family
@sela87882 жыл бұрын
“We are raising them to go see Jesus.” God bless you! 🙏🏽💖
@bobgumkowski95954 жыл бұрын
It blows my mind that anyone can see this sort of tragedy and heartbreak and still think there is some sort of all loving, all powerful thing out there putting this family and those children through that kind of suffering.
@madiemaelou5 жыл бұрын
I have a rare genetic disease, though not nearly as rare as Batten, and I’m so touched by these parents. They’re truly taking this with grace. It took my family a long time to come to terms with my diagnosis and I’m not terminal. These parents are just perfect. Many prayers and blessings.
@taerium30195 жыл бұрын
“And now I can die.” ok i broke down there
@litisia15 жыл бұрын
Whaaaw. That's powerful. God bless you and your faith
@honeycomb51205 жыл бұрын
"We're raising our kids to die" This crushed me I'm sobbing I feel so much pain for this poor family but I know those kids are going to heaven 😖💗
@partywithkrissy5 жыл бұрын
My friends daughter had Battens Disease. It is such an unfair disease. I went to a Battens Disease conference with my friend and it was awful. I met parents that some lost all their kids. I will never forget the faith these parents still had. They celebrated their children’s life and were comforted knowing their children were in Heaven. The peace they felt could have only come from God Himself. Cheyenne went home when she was 10 years old. She was in a vegetative state for 7 of those years. When she took her last breath, she smiled. This was the first time she smiled since her diagnosis. It was the most tragic yet beautiful thing I’ve ever seen. I named my daughter in her honor and I am so lucky I knew this precious girl. 💕
@kayedge3653 жыл бұрын
As sad as this is, it is the most full filling, beautiful story about a strong beautiful Christian family I have seen. God bless this sweet family with the joy of life, peace and grace. Knowing where your sweet babies will be waiting for them is what I pray will bring God's glorious peace to your hearts. Love and hug to each and everyone of you.
@ririarevenna28535 жыл бұрын
It's heart breaking that the mom and dad have memorized the symptoms and effects.
@stewartcook9185 жыл бұрын
Miracles can happen. We will pray for them. We will also pray for peace and guidance. GOD HELP YOU.
@horseenthusiast99035 жыл бұрын
Wow. As a Wiccan, I admire the level of faith of this family. It must be rough for those kids to know just how short their lives will be, but in a way I imagine it’s also somewhat freeing. I hope this whole family finds peace and contentedness.
@Artwonder4987 ай бұрын
My good friend has a daughter is slowly dying from Battens. It is so unknown; and so horrible. Her daughter is completely blind now. She is an amazing mom and does everything she can for daughter
@lindseymacintosh35 жыл бұрын
Sending you and your beautiful family all the love and prayers in the world !!!! We lost my cousin to Batten, and remembering his diagnosis my heart breaks for you !!! They are beautiful girls and you are doing an amazing job !!!! ❤❤❤❤❤❤❤❤❤❤
@jessamonet26345 жыл бұрын
Wow this is what a parent is. Selfless love. Sweet real life angels 😭🥰😭
@oliviasabella90344 жыл бұрын
Agreed
@MsBELLE75 жыл бұрын
This family is amazing. They are a testament to love
@asmamohiuddin_47545 жыл бұрын
We are raising our kids to die.... The most painful thing for a parent to say... I wish for some miracle to happen so that they live a happy long life ahead..♥️
@cindysnow8025 жыл бұрын
They have made advancements with cystic fibrosis so there's always hope that a miracle treatment may be found
@anakruger24125 жыл бұрын
These parents are so brave to face this, and to tell their children what is going to happen to them. It's hard enough for the parents to come to terms with it, and I can't imagine having to explain it to a child. You are all beautiful, strong people
@vickimartin3008 Жыл бұрын
God bless you and your entire family. I was absolutely heart broken and in shock to learn about this disease some of your children have. I had never heard of it before. I can't even imagine raising my babies, only to have such short life spans. When I heard " Raising my children to die", I just lost it. I could not stop crying and feeling such awful pain for you and your husband. Your oldest daughter is so strong &amazing. She must be a down to earth realist. I will be sending so many prayers to God's ears from my lips. May God bless all of your family. I will never forget you and your family. ❤️🙏🙏🙏🙏🙏❤️