Rare Sisters: Beyond Batten Disease
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- Опубліковано 21 лис 2018
- “And my mom and I were just sobbing. She doesn’t know that piece of this story. But she gets it, in a way she’s okay with whatever happens. We’re raising our kids to die. And we believe that when they do, when that happens, they’re going to go to heaven.” - Beth and Jon
"Batten disease, or Neuronal Ceroid Lipofuscinosis (NCL), is a family of rare diseases caused by autosomal recessive genetic mutations resulting in the body.
These genetic mutations disrupt the cells' ability to dispose of wastes. Cells are thrown out of balance with the build-up of proteins and lipids (fats). There are 14 known forms of Batten disease and you will often hear them referred to as CLN1-CLN14. It is estimated that 2-4 births per 100,000 in the U.S. are affected by Batten disease, though some researchers in the field suggest these numbers are low." - more info: bdsra.org/what-is-batten-dise...
Symptoms like visual impairment and seizures are among the difficulties they will face. Because of widely varying genetic mutations, the disease can look differently in each person. While the symptoms of Batten Disease may vary tremendously for each child or adult, there is some overlap and common paths for diagnosis.
Strides are continually being made in research. Many different efforts are in development with the goal of improving quality of life, and making progress with treatments and cures for various forms of the disease. BDSRA’s work in this area includes funding and facilitating scientific research at multiple steps throughout the drug development process. We are a transparent, patient-driven voice and advocate. Families, with all forms of the disease, are our primary focus. Working together as a united voice, we elevate the impact of the Batten community in North America and beyond.
I'm an atheist, but when the mom said "we're raising them to go see Jesus" my heart broke
That was Jesus knocking at the door of your heart, let Him in.
@@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!
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 ;_;
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.
@@watchergirl4christ Oh please.
“Will it hurt when my eyes go dark?”
YES IM CRYING
Your crying
My eyes are just sweaty
Yessalyn Villegas watch love Kennedy it’s a true story about a girl with batten disease and I cried and cried
Thx for spamming
That part destroyed me.
It’s so sad that they didn’t even know how bad it was and acted like it was fine, I cried too
“Will it hurt when my eyes go dark?” That is the saddest thing ive ever heard a child say.
😢😢😢😢
I cried 😭😭😭
No honey it wont hurt 😭🥺 not physically at least.
😢
YEAH!!😭😭
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.
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.
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
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.
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.
@@MagMaybe They could probably go for a selective ivf treatment, where they remove diseased embryos
"We're raising our kids to die."
*that hit me* *_so_* *hard*
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
The saddest part is these two girls might leave earth sooner than their parents :(
i got so sad when she said that, a tear may have came
i a m c o n f u s i o n it really did 🥺🥺
MelLovesToDraw yes
She was practicing being blind. That’s heartbreaking.
666th like kskskskskkss
@@Chickitten really dude
Either that or the bright lights make her sight even worse and they are trying to help slow it
@@Chickitten
Danielle pullin
Jessica massey
No, I think she's already losing sight and light sensitivity could be what the blindfold is for....
"Were raising them to go see Jesus."
That hit me HARD
I cant imagine the pain... 😥 i hope so badly that their Jesus will take care of them and i hope there is a heaven. ❤
@@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.
@@TheNo1Atheist1 i dont believe in god....
@@sofiab.9129 Very glad to hear that.
And Jesus is always watching over them.... Omg im in 😭 tears
this is the saddest thing i’ve ever seen in my whole life
@Plushie Rainbow may? They wont. That's what's so absolutely terrifying about nature.
What happen to her I can't understand?
@@chickendogthehonest2884
Well dude.
You don't need to be so straight to the point.
My son was just diagnosed with this last Friday-
Raising our kids to die literally broke me down, I’m so so sorry. They’re all soooo gorgeous
👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀*hell is your way* 👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀 *dont stay up at 3Am*👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀👀 -DONT- 👀👀👀👀👀👀👀👀👀👀👀👀*666*👀👀👀👀👀👀👀👀👀👀👀👀
jungkookie need ma cookies omg! Wtf
Tattoo Queen why were they raising there kids to die
2,000th like, that broke me down too 😥
@@missbrandi2193 For your information It is 4:00 AM right now.
"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.
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.
@@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....
Emily BH you disgust me
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!
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!
“ And now I can die”
Noooooo why must the most beautiful people have to go 😭😭😭😭😭😭
@Mr. Moon She means beautiful by beautiful souls, not faces
@Mr. Moon we shouldnt have to explain it. . .
Batten disease seems to strike the most kind and compassionate people. :-(
Why did this beautiful comment start an argument? Some people take sweet things and turn it into negativity.
@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..
These parents complete each other’s sentences. So sweet. I’m so sad for the diagnoses of these beautiful girls.
And they complete the bad gene strands
"And now I can die"
That got me.
maddyy
yeah. Me too. That’s when the tears came down.
i broke down when i heard that part
Sobbing!!
maddyy right 🥺🥺🥺
That’s just…The saddest thing I will ever hear out of a child
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.
So true
I don‘t believe in God - I believe in people with a big heart! These people are helping you through hard times!
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.
Hareece Thorogood but society has provided community and support to this family. Just because they are religious doesn’t remove them from society.
@@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.
I can hear the pain in her voice it’s so sad
Skysune I know this is serious but OMG ENTRAPTA YASSSS I LOVE THE PROFILE PIC
LapisLazuli 1234 YES
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.
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
Why are you trying to bring me down?
"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! :)
That part really got me 😪
@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.
I loved this phrase so much. I love it so much. Jesus should be who we're living our life for.
Angie Gomez who said they aren’t going to grieve?
Is the part i broke on
“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.
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!
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.
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.
Thomas wow you live so close to me! Weird. Lol 😂
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.
“ we’re raising our kids to die ”
felt.
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
Dang, i didn't plan on crying before classes this morning.
Same
Szerencsére én hétvégén láttam 😭
I’m a Muslim and I love how they are so religious
I’ll pray for them I swear
We should pray for them, it's Ramadan
Funny Bunny ||| yes girl let's pray for them in
Tarawih prayers ♥️👏🏻✨✨✨
@@duai7090 yes girl Ya Allah help them 👐 say ameen 💕
I hope they will be in peace
Insha Allah she Will be okey, I pray to Allah to make it easy for the girl, He is Ashafi.
"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.
@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.
@Mr. Moon wtf is wrong with you. On almost every comment I see a replies from you and it's always rude.
unlike the god science could give an answer and also a treatment. A CRISPR could be a cure if they will not hesitate.
@Mr. Moonempathy? ever heard of that?
@Mr. Moon okay, but when was the first person ever rude
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
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 :(
What happen to her?
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.
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❤️✝️😇
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
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.
Susanna K I’m Christian
It said they're Catholic btw.
@@jadamcleod3701 I'm Christian too
I pray you know God's love too! Deeply and that it give you peace and joy
He is close to you, too.
🌹
"Now I can die."
I'm actually tearing up rn 😔😭❤
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😊☺️
Thats sweet ☺
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.
yahmik allah
I pray you accept Jesus as your Lord and Savior
Jessica's Art don’t force your religion on someone when they already have a different belief
@@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.
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.
Why is the screen getting blurry???
Oh w8 its just me crying😢😢😢
park chim chim SAME 😪😪😪😪
bruh armies are every where. lemme guess. is jiminie your bias?
Yah this made me cry too. Wow.
When you cry it doesn’t get blurry ??
@@mellovestodraw it does sometimes
“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.💕
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❤️
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?
@@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.
@@maggiefollett636 How exactly? Coming from an athiest I agree that your comment seems so unnecessarily agressive
@@strxwberri1031 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. ❤️
@@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.
I believe the Dr should have explained what CLN3 was to the parents in layman's terms.
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.
@@smiavsvs3677 I agree. Primary Care doctors are really bad for things like this.
@@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....
@@smiavsvs3677 Yeah that's what they're supposed to do for any medically significant test results be it from something as common and fixable as raised blood sugar levels that indicate pre-diabetes to something as complex and difficult as a rare genetic disorder. It's supposed to be delivered in person at the doctor's office (NOT over the phone) with all support personnel informed and in place to provide the best care possible if that's necessary. I don't know how the doctor dropped the ball so badly on that one. Either it was their poor decision making skills or the family's particular health region didn't have the standards of practice in place for a situation like this.
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.
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.
"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
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. ❤
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.
This just broke my heart into a million pieces 😭😭
You will forget in a day and go about your life. There needs to be funding .
@@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!
@@mandymoore5856 I agree with you
I'm not familiar with the disease. However "neuro-degenerative" speaks for itself and is absolutely heartbreaking!!
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.
“We are raising them to go see Jesus.” God bless you! 🙏🏽💖
My heart goes out to these parents. How strong they have to be to wake up every day knowing what they know :(
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!
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. ❤️
I don't know why this show up on my UA-cam 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 ❤️
*“Is it going to hurt when my eyes go dark?”*
At that point I just got a rush of mixed emotions and started sobbing.
Ugh gosh, this stuff really breaks my heart. Blessings to your family. Makes me appreciate life a little more with each video I watch.
“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.
This breaks my heart 😔 these girls have two of the most strongest parents I’ve ever seen. May god bless these beautiful people ♥️
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
@@NOLCPBXUDS thank you 💜
May your baby Rest In Peace. They will be forever missed.
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!?!
Yes please look them up they've raised almost 6.5 million dollars to go towards curing it.
@Gina Davis Gina you clearly have no idea how any of this works.
Gina Davis You could theoretically cure genetic disorders
@Gina Davis not for these two.. But for those to come.
@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.
“And now I can die.” ok i broke down there
“We’re raising our kids to die” that hit me so hard.
One day I want to expand the researches on rare genetic diseases and I am going to help families like this
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
I will pray you find cures like a superhero!!
🙏🏽
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.
Best of luck ❤️
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!
This was powrfull
brainwashed?
Watched a child die of this disease last year and it was the worst thing in the world. Sending my love to this family.
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. 💕
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
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.
@@inverteddoesyoutube9268 Thank you so much. You just made my day and I'm sorry for making you cry.
So touching. These parents are doing everything right. ❤❤❤
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
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.
I don't either but I can't begrudge them any comfort they can find.
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.
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.
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.
"And now I can die" this really got me 😭😢😭😢😭😢😭😢😭😢
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 !
Miracles can happen. We will pray for them. We will also pray for peace and guidance. GOD HELP YOU.
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.
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.
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"
A G please talk to me
The joy of the lord gave them the disease. Yea thats the fucking reality
It's heart breaking that the mom and dad have memorized the symptoms and effects.
When I heard the mom say “We’re raising them to go see Jesus” I thought that’s what we should all be doing. Raising our kids to go see Jesus. We hope it will be a long time before that, but if they’re raised that way, they’re ready! 🙏
We know a family with 10 children, 4 of the children with Battens Disease. Three have passed away, one is still with us, but progressively losing ground. They are the most loving, kind, Christ like people, full of faith. The children are so beautiful! The heart break these parents suffer over years of watching their children fade away is devastating. My heart and prayers go out to this sweet family. 💔🙏💕
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.
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!
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 ❤️😞
This is precisely why genetic counseling is a must before having children. And, I say that as someone with a genetic mutation.
Catholic communities are so close its a family. I’m getting confirmed this year and I’m so proud for them that they have done so good❤️ I have so many prayers for you and your family❤️❤️
Wow this is what a parent is. Selfless love. Sweet real life angels 😭🥰😭
Agreed
I was introduced to Batten's disease when I was a teenager doing a mentorship with a younger blind boy. At least I was able to show him that he wasn't the only blind boy in our town and that being blind didn't have to stop him from enjoying the life that he had. I hope that helped him and I hope I can continue to help battle this monster, at least by being a friend.
I know (knew) three brothers with this disease! Didn't know the name until this video but I checked in with one of their old carers and it's this one. All three went to my school and it was just told to all us students that this is how it is, they're going to die sooner than we are and we have to get used to that idea.
One of them died two years ago, he was 24. Literally seeing them breaking down knowing you can't do anything, it's not fair.
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..♥️
They have made advancements with cystic fibrosis so there's always hope that a miracle treatment may be found
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.
She might be an Indigo child. Beautiful family, I wish you good luck and all the best
This poor couple. How unbelievably hard this was for them to share. I could feel the inner struggle knowing the outcome of this terrible fearful situation with these beautiful little girls. How brave they are. God bless them. “We are raising them to go see Jesus”. Amen.
Me and my brother (were both young teens) both have hEDS which is not fatal, thank god, but still horrible. It also has very little research and isn’t diagnosed in like 80% of the suspected 1/1000 people with it. My family works really hard to raise awareness and research. We started a support group and tomorrow we’re having a fundraiser. With things like this all you can do is pray for more research and a cure.
I don't have any of this, but I do have ITP, and you know hearing that kids, teens, and even adults having diseases/cancer and horrible stuff is horrible and just heartbreaking.. my mom tried to raise awareness about my ITP but putting it on her Facebook and I really hope finally doctors can find cures, or treatments for the fatal diseases, and cancers, I hope for you/them/ and everyone else with problems.♥️ 💪
Having to teach your children that they are going to die, soon, and there is no cure… that’s so hard. I know for a fact I couldn’t do it
the people that disliked this missed the like button because their eyes are full of tears 😭
"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 😖💗
that's a sad story, sending love and peace to the family
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 💖
You are teaching your daughters to live *in* and live *with* grace during the time they have on this planet. You're doing awesome.
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.
Whaaaw. That's powerful. God bless you and your faith
Omg, I’ve never cried so hard! This family is absolutely amazing
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!!!!
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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.
So the doctor didn’t explain anything and instead focused on the emotional impact? The parents had to do research instead of having a professional explain the scientific facts? Seems like a good summary of the American health care system
At least you don't have to be afraid of going into a public hospital for a simple surgery and dying because the doctor doesn't how to administrate the anesthesia
@@ryssuesanz1660 Yeah, we aren't. I'd much rather treat my kid's cancer under the care of a supervised teaching hospital than not being able to afford care at all.
The line--"we are raising them to die"
Literally got tears in my eyes😢😢
I'm terminally ill and some horrible people ask me where my God is now. I say can't you see he's standing right beside me and he even Carries me when I have trouble walking. Your girls may not have a long life but that's only because they will achieve all that God has set out for them at an early age. They are your little Angel's and I know that you feel this too. It's hard I know because you want what the world has in store for them but God wants them for something special. Learn from them while you can and we all thank you for sharing your beautiful daughters with us. God bless. Xx
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