The Moment Parents Learn Fate of Dying Daughter
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- Опубліковано 29 вер 2024
- THREE YEARS AGO, GLENN AND CARA O’NEILL TOOK THE PHONE CALL THAT WOULD CHANGE THEIR FAMILY FOREVER.
A call letting them know whether their daughter Eliza would be accepted into a possibly life-saving clinical trial for Sanfilippo Syndrome, a rare, genetic, and fatal neurodegenerative disease likened to a childhood Alzheimer’s. You see, there are certain tests (blood tests, lab tests, cognitive tests) the doctors have to run to see if a child will be eligible or excluded from a trial.
Sanfilippo Syndrome is a rapidly degenerative and fatal brain disease in children, currently with no cure and no treatment. It's often likened to a childhood version of Alzheimer's due to the dementia that sets in early in life. It's the worst disease you've never heard of. Help us fund research to bring about clinical trials that can lead to available treatments for all children, and one day a cure. Thank you for watching and caring. You can give children a chance at LIFE, and give parents HOPE for their future, at www.CureSanfili...
#SanfilippoSyndrome #CureSanfilippo
I know exactly how they feel my son was born with cancer spent many night and days being told he won’t survive! Well mason is now NINE years old and doing great 👍
Fantastic!
Wonderful news ❤️
I'm so glad 💖
Well done. Best wishes from Canada on many more years.
Respect and love to you and your son
You would have to be dead inside not to at least tear up for this story. Really happy the little girl got the treatment
I’m not dead inside and I didn’t tear up
My wife and I have 3 daughters and could not imagine going through this scenario. I am grateful to the higher power that my family is safe and healthy everyday I wake up!
I remember when My Youngest became very, very ill. I was a nurse from a big city and we had just moved to a small town. The doctor told me my child had a "bug" she went down to 52 lbs. Long story short I took her to a large hospital outside of our town, it was touch and go for months. Now my child is in her 30's she's still ill and suffers from long term health issues but she's alive and lives life to the fullest, and her family is right there in her corner.. ALWAYS!! MOMS, DADS ALWAYS TRUST YOUR GUT, IT NEVER LIES. NOT ALL DOCTORS KNOW EVERYTHING AND YOU KNOW YOUR CHILD BETTER THAN ANYONE ELSE
Hello Joanne how are you doing hope you’re having a great time with your family may God bless you and your family
The United States has to change the way the health industry works Every treatment, Every surgery, Every medication available no matter what
How could someone dislike a video about a little girl getting a chance at life? Sending prayers for this family.
prayers don't do anything tho
(not trying to hate on you or anything but It unfortunately doesn't work like that)
pwastic yes because common sense and science is false but a magical bearded guy isnt
Thank you!
Hope is one of the strongest feelings one can have
Theese comments are a fucking mess
David Cain dude, he's far from being triggered. but you know, close enough
cher65p4 they can curse, its their life. no need to direct you're way
Amber Lilly ikr
We laughed reading this after reading the comments. Thank you :)!
Triggered. The dumbest word on the internet right now
" This is what HOPE looks like "
Why make something so uplifting into something so sad.... what's wrong with the uploaders of this video?!! Glad to hear that she survived.
BecauseICanTBH
And you just generalize it?
Not everyone is like that
This is the story. And to those other who replied here, yes we were trying to get more attention. The reason we recorded this is because we run a non-profit Cure Sanfilippo Foundation to advocate for and fund research for a treatment or cure for Sanfilippo Syndrome. 4 years ago we realized that personal, authentic and unrehearsed moments are particularly compelling (just the way the world works today), because a video on our story raised over $2M for research for children (www.CureSFF.org/video). The interviews were unrehearsed on that video. Any time during our journey where we feel a moment is going to be special, we video it so that perhaps we might use it to spread more awareness to gain more funding for research for the so many children suffering and in need of a chance at life. I knew this phone call would be either: 1) Yes, she passed her screening tests and will be getting this experimental treatment, or 2) No, she did not pass the screening and she would not get the treatment...the only thing out there that might give her a chance..and we would be taking her home to know her certain degeneration, dementia, and death. You get so used to it, you don't even remember the camera is there. We will film and post any personal moment if we feel it will help the cause to Cure Sanfilippo and get more funding for clinical trial options to save children. I'd argue we'd be not doing everything we could, if we didn't film and post these moments. We used to be a private family, but we've had to change that to try to get attention for this rare disease. I truly hope no one ever finds themselves in the position we and other families are, and the desperation of having your beautiful child with a rapidly degenerative terminal brain disease with no cure or treatment. Perhaps you understand now why we posted this...even if you don't agree. Perhaps not still as well.
bchoor thanks for saying she lived. now I can watch the video knowing the outcome.
You are so ignorant. You have no idea what childhood terminal illness does to a family. It is not all sunshine and rainbows, sorry! It's not a "feel good" video for your enjoyment. These are *real people*. I am a childhood cancer survivor. Yes, I got treatment for the worst, most painful 3.5 years of my life and survived but my brain development was effected, I have PTSD, have suffered from depression and anxiety from age 10, and might not ever be able to have a baby. Doesn't make your feel warm and fuzzy? Too bad. What is wrong with you?? This channel is trying to raise money for those who don't have your privilege of not even comprehending the struggles of childhood illness. Check yourself.
@@cs-zr9xy sorry to hear your brain development was affected. It’s clear why you missed what I was trying to say now. It’s an uplifting story; designed and narrated to make people sad, not a sad story. It’s playing on peoples feelings to get funding; it comes across as disingenuous. Yours, on the other hand, sounds like a sad story, so perhaps you’re projecting a bit. Let’s all Get a grip and quit trying to propagate sadness and negativity. That’s my take.
Their prayers had been answered while somebody else’s weren’t. Too sad…
Thank you God for the wonders you do!!
I used to know this girl who was very sick when she was young it was a miracle that she survived but she did and she was one of the most amazing people I’ve ever met she was my best friend and the love of my life she meant the world and more to me one night I dropped her off at her house and went home that night I called her and talked with her for hours and that’s when everything went quite she was murdered by her alcoholic step father she’s gone now and I don’t know what to do I’m lost and blame myself for being the one who brought here there
i wish i had parents like this
bless their hearts and the baby 🙏🏼💗💗💗
I'm so sorry for your loss but you have to be strong
Why would somebody have this on a video. This is horrible. I remember when I was leaving from church with my fiance and we are having such a great day and my phone kept ringing off the hook or sorry his phone kept ringing off the hook and I had my phone off that day for some reason and I normally don't. My fiance just looked at me and I didn't understand I he didn't say anything he just looked at me and tears were coming down his eyes and when he told me I screamed. I lost my first cousin and I can still remember now how horrible that felt. Two of my cousins died following and I didn't get to see them to say goodbye. Although I was so angry and in just enraged I wasn't able to I thought about it later and I don't want to remember them the way that I do my other cousin. Because now although I have so many memories of her the one that sticks out is that of her lying on the gurney and it is tormenting. Losing a child is something I can't even imagine I mean obviously nobody can unless they experience it. Losing a family member and itself or a friend is already tragic and losing a child is something that is incomprehensible and unimaginable. I feel so bad for those who have lost a child and my heart goes out to them especially those who have managed to find a way through life to find happiness again. Those are the strongest people there are
Very sad, my love goes out to Yous very hard moment good memories to keep
Weird to film your self getting a phone call
I hope they get better soon
Sometimes hope doesn't follow threw as many wish, but as long as you keep fighting (hope) will always be there. Quote by Robert L Landrum.
I was born with ADHD.
I am lucky that I am healthy the way I am.
ADHD isn't a real illness, you heartless fuck. Ooo, I can't remember to shut my door because I was distract by the two squirrels fucking in my backyard. You're retarded, not sick
@@pervisgavin1730 are you self projecting?
I'm very deeply sorry for this, but believe me, if you really love him/her, its better this way.
Faith and Hope are literally the glue that keeps me going!!! May God continue to bless this beautiful family and their daughter.
Hello Cheryl how are you doing hope you’re having a great time with your family may God bless you and your family
Can't even hear it, what's the point.
Why are you filming this?
❤️ AWESOME, THANK GOD 🙏
I can't imagine having a child and being told that I don't have enough money to purchase a longer life. This country is beyond disgusting when it comes to healthcare. I took my cat to the vet last week and it cost almost 3 grand to keep my cat over night. Then I got charged for blood work, an IV for fluids, an ultrasound and medication. All together it was almost 5 grand. Took my entire savings to save my cat.
Thank you.I gotten my degree and honestly because of that reason couldn't or refuse to practice.It hurt to see these kids suffer and mostly money was the issue more than anything.
Sad. 6 years ago (10/29/15), our cat had to pass away because the 1K treatment for bladder crystals was too expensive.
Thankfully healthcare is free in europe
Sadly they take advantage of our desperation because they know we would be willing to give anything to get a longer life 💔
I charge my poor patients even more for a consultation
As a parent of a child with a very rare genetic disorder ( 1 in every 11M people) I can totally understand and appreciate their hope! 🙏 ❤️
I'm so sorry and wishing you HOPE on your journey with your loved one. Thank you for understanding.
Bless you an your lovely child, hope you both get many healthy years..
Hope you guys are doing alright :)
I pray that God will always give you strength to get through everything 💖🙏
I hope you're doing well 🙏🏿🙏🏿
Watching this reminds why I should never get too mad at my children when they do something wrong. GOD has blessed me with their health. Prayers for this family.
Heartfelt video! This song is dedicated to everyone who lost a loved one. ua-cam.com/video/JSbGGiSe3S8/v-deo.html
Me too... same... even if my kids are big and adults now....im still screaming at them 😭...but... God knows how hard i grow them!! As single mom...they are my life ❤️ my all!!! God bless all the kids and parents of the world 🙏🙏🙏..
Where is this loving God that christians talk about !!? Oh ! The one that does not give a crap about the tens of thousands of innocent children that die everyday??!! Poor baby I hope she made it ok.
@Bad Kitty 369 With all due respect Bad Kitty 369, I’m not harassing anyone I merely stated a fact and asked one of the many questions that no Christian to this day or believers from other denominations have been able to answer. It’s a fact which you can verify yourself that over 25,000 children die every single day, mainly from malnutrition, and preventable diseases, looks like some people can’t handle the truth, I used to be a christian but I have since moved on. I am reminded of a real event where a plane crashed with over 250 people on board, they all perished except for a small baby, all the believers were saying “ it was a miracle ! God saved the baby ! “ So I asked, a miracle of God ??! 249 people lost their lives and you call that a miracle ?! No one knew what to reply, but you ask any physicist why that baby survived the crash and he will explain it to you, it’s called science, the same discipline that enables us to have this conversation. I find that it’s extremely important and healthy to have these types of dialog/debate/questions no matter what your beliefs are. You have yourself a great day and stay safe. 😊
@Bad Kitty 369 “I don’t believe in a deity but I believe in freedom. And these people are free to think what they want.” And Joe is free to post what he wants-what is your point? Lmao. Expressing a different viewpoint isn’t “harassment”.
It doesn’t matter if they won’t change their minds or not, maybe his intention is just to express his own views. It’s your *opinion* that it’s pointless, not fact-it may plant a seed in others who are already questioning anyways. You yourself escaped the dogma of religion, so someone/something planted the seed for you to do so.
You didn’t need to hear the call. That was their private moment. I pray something positive came out of this. I can’t begin to imagine what they have been going through.
“Their private moment” ? -- They have a camera on the dashboard of their car so everyone can see their reaction to the news about their daughter.
@@lilybond6485 doesn't mean they need to hear phone call
Then they really shouldn't have posted this video at all if it was a private moment. They are kind of using them as click bait for their channel and videos by posting this.
Yes, we didn’t. They are using it as clickbait plain and simple
@@lilybond6485 maybe that's why we didn't hear phone call and only saw text
Loved them while they’re here. Lost my twin boys to brain cancer 2 weeks apart and I would do anything to have them back. Hold them and tell them you love them every day.
I'm so very sorry for your loss. Yes, we cherish every second. ❤
I am so sorry. Words can't express how I felt after reading your comment. My sincerest condolences
They are in a better place❤
🫂
I am so terribly sorry for your loss. There is a bible verse I love about God being near to the brokenhearted.
This reminds me of my mom. I have a congenital disorder that caused extreme, unending pain from the ages 8 to 18. We went to every doctor but my disorder was treatment resistant. Finally I had an experimental spinal surgery at 18 and it miraculously took 90% of the pain away.
I didn’t expect my mom’s reaction. She broke down in tears and said “I’m so sorry it took me this long to help you.” After all she had done for me, she held herself personally responsible for my pain and believed that as a mom she should have been able to fix it. That’s a mother’s love.
@@haristhebosniaklion8584 why do you keep commenting this same thing over and over you freak
Im so sorry about it. Glad you are well now ❤
😥😥😥
🥺 wow I’m happy you were finally able to get some relief
Awww omg your comment made me cry. 😞🥺 I know that feeling of wanting to be able to help but you can’t.
They isolated themselves for 2 years meanwhile people complain about wearing a stupid mask
Edit: Seriously? Just grow up some of you are like 30 and still throwing tantrums?
All I wanted to say by my comment is how hard it must of been and how great they are for managing that. Well done to them from the bottom of my heart. They went through hell and back but stayed strong and one comment by a stranger on the internet broke you. 👏🏼👏🏼👏🏼
Because wearing a mask is supporting the destruction of our country
What country is that exactly? Last I checked this was a global situation.
@@mehastillmeya2824 good ol’ USA
Okay good luck not wearing a mask in America and seeing the situation worsen while other countries who listen to scientists and doctors are starting to get back to normal life.
China, Greenland, Australia, Singapore, New Zealand are all examples of places who’s covid rates are now very low. So yes some places are getting back to normal. I’m glad it didn’t affect your grandma very much but she is one out of millions. And millions have died from that same virus. It affects everyone differently and I for instance know a young man in his 20’s who died from it. Just because something hasn’t affected me personally I’m not going to say it hasn’t affected anyone else.
You say you didn’t get it while in the same household but its well known that you can be a carrier without showing any symptoms and therefore you could be spreading it to others who many suffer or even die because of you decided you knew more than professionals who have studied 10+ years and dedicated their lives to treating people.
There have been 3 times more deaths from covid than there are from the flu annually (if you look at any reliable source) and that’s not counting the people who survive and have damaged respiratory systems, lack of senses and other long term effects.
I really cant say anything about the side effects of the vaccines because I don’t know much about it. What I will say is that Bill Gates is a software developer not a doctor with years of studying and experience nor the type of scientist that specialises in viruses. Just because someone’s a computer scientist doesn’t mean he knows the first thing about healthcare. I’m pretty sure Bill gates even funded covid vaccine development so I doubt he said it will kill people.
would've preferred to just hear the call over all this piano and subtitles
t
HeyGuysItsDeath the dash cam probably doesny have a mic but the pisno was a bit irratating
seestarrs hopefully that's where it's going ...
Right
Love Recovered You are implying that it's a rouse that they are working for donations and they going to do what instead? Buy crack instead, head to Vegas and blow it all roulette?? Maybe between their prayers?! I'm floored right now. These people sure have a great scam going. Lmao!
When something is in your recommended for so long you just give up and watch it
Brit M same.. I'm bored
yup and then you watch it and cry
Me AF
Brit M That always happens to me im like don't watch it 5 day later I need to watch it
ikr
This is just beautiful. My daughter died yesterday. I’m shattered but knowing that people have beat the odds makes my heart have more hope.
I'm so so sorry :( Our hearts are with you.
Lol
A simple name indeed?
Michael Briand jk im sorry
Michael. Let go of the hands but not the heart. God bless💔💔
Such a shame that health care is not free in America. As an European I find that aberrant.
Apolline Vilbois yes I love America but all it wants is money it doesn't care if we die
Super Nova as a fellow Canadian also, Healthcare is technically free but there's a lot more steps to it, and yes taxes are WAYYYYYY higher in Canada because your paying Healthcare tax for EVERYONE, that's why healthcare is free. Honestly it's worth it.
Super Nova also healthcare is free in a country in Europe called Slovenia also university is free there to
KingKayden21 again still money
without fucking money the COUNTRY will die, it does care if we die
I cried with them. Didn’t have to hear the call, their expression was enough to tug my heart. ❤️
Yep
True
same
I can't imagine the emotional rollercoaster they've been through, thank you to every single person who donated!
@@anunknownperson4018 we all know thats cap lol
Im so sorry for your lost😭😭😭😭😭😭😭😭😭😭😭😭Keep stronff wehave here for uu😭😭❤️
Why must people be so vile and hateful when commenting on posts and video?
It took me like 2 minutes to Google the answer.
Today Show: As of 5/3/2019 Eliza O'Neill is still alive. She has lost the ability to speak but communicates with noises. She was the first in the trial. The children who are in the trial now receive 6 times the dose that she received. Because of the families in the trial, the condition is no longer a certain death sentence.
Please! Stop being hateful!!!! Online bullies (and that is you if you take out your aggressions on people's posts) are so very ugly inside.
Choose to be kind! Take a breath before you reply to a comment.
Thank you!
Thank you for the update. Bless that precious child.
Thank you for this.
So true!! Thank you for the update on this precious beautiful child
Thank you for the update. I am so glad she is doing well .
I have a 5 year old daughter. I was the first to see the pregnancy test results. I was at every Dr. Appointment. I was at the hospital for her birth and the Dr. let ME deliver her. I caught her, when she opened her eyes, I saw them 1st. I've been there for her for every step. She is my entire world. I would do anything for her.
Seeing this dad hold his daughter the same way I hold mine, killed my soul. I can't even imagine this. If my child died, I would kill myself in a second so that I could be there with her. I'm so glad you were accepted and I sincerely hope it all worked out
I say the same thing! I have a son, he is almost 10 now, but he is literally my entire world, and I’ve always said that if anything happened to him that I would end my life too because I would literally have no reason to live anymore, and I would want to go wherever he did! Some people have told me I sound crazy for saying that. Honestly don’t believe they I TRULY knew what it meant to love someone until I held my son for the first time, that rush is the most overwhelming feeling I’ve experienced! My heart aches for parents dealing with things like these, I just can’t even begin to imagine how hard it is.
If it were that easy, every parent would kill themselves to be with their child. Truth is, you would end up at a much different place than your child. Better to be patient and know she or he will be there waiting in heaven once your life was done here on Earth, the right way.
Every child wants their parents to continue with their life after child’s life ends...
I would to tbh smh. Any child that goes through horrible things that I see online literally makes me cry smh. I could only imagine how I’d feel if my babies were going through something so horrible smh. I hate that life isn’t fair. Noooo child should suffer!
@@videoswithcats 🥺
Gosh poor girl I wish she had more time for her daughter
Well! you don't want to rely on just the hospital,or docs,nurses,etc. God works through them,I know first hand,having almost died twice.
JustMe I don't agree with Kimberley, but there's definitely no need to call her a "f*cking retarded c*nt" though. Smh that's really offensive and gross!
JustMe from your comment it appears you believe in God but He would never be ok with the way you're speaking. There's no need to be vulgar and so hateful, especially on a video that's so serious and emotional.
Leanna Art draws! Both parents mouth "Thank you " with relief!!
pwastic well if he's all loving he doesn't care does he, it's like when you're supposed to say he doesn't care if you're Christian or not he'll still help you
Rather sick and twisted their focus was on recording this for attention on the internet wtf
Yeah looking at it from a different perspective, it did feels weird.
I know the feeling all too well. My daughter is a cancer survivor. I’m happy to hear this baby is getting another chance at life
For everyone wondering this little cutie is currently 8 years old and living life the fullest even tho she may not be able to speak if you wanna know more about her
Go to savingeliza.com ( UA-cam channel)
Thank you!!
Isa&femme ty for info
Gr from the netherlands
Isa&femme Thank you very much for the update :-)
Tomato Potato explain to me why they dont deserve children
Tomato Potato why not I think they are wonderful parents.
I hope she's doing well, prayers for that family and their daughter ♥️
There are some really good and supportive parents out there I wish my parents were like this
Thank you for your kindness.
I hope that changes, you deserve their concern.
I know the feeling. My parents never loved me. I can't even understand why they didn't just give me up.
Gupta I wish that for you too. Elvis I'm so sorry. There is a scripture that says when your mother & father forsake you the Lord will take care of you. Ps. 27:10. May it be so for you both
@@ellenm1698 thank you, I appreciate that verse. Although I didn't have an earthly father that truly loved me, I'm very thankful for having a heavenly Father that loves me much. I know he said to call no man Father on earth that we only have 1 Father which is in heaven. I've suffered my whole life due to my parents neglect. I'm trying to find my way back home to Jesus. Without him carrying me for many many years, I don't think I'd be here. Pray for me!
Crying my eyes out. First time I've cried since my mother died eleven years ago.
I have a seventeen month old daughter.
Donating.
Thank you! The support means the world to us. You know.
Ricky Murray Bless you 🙏
Ricky Murray I'm sorry and I hope your doing ok
....you’re donating your daughter? :0
Ricky Murray I'm sorrry to hear :(. Rip
😭 why did I watch this? I really hope this little girl is still alive and doing great!
Yes...!!!! 🙏😔
She died not long ago now
@@raredays2767 ohhhhh really??? 😭
@@dimitrakapa4887 yeah its a shame really
@@raredays2767 Is that true ? If so can you please provide the link just for confirmation?
2024 here…
Can anyone give an update on whether the little girl survived - please😢
It would really help if you could.
Why are they recording wtf
Me in 2019: Isolated from a virus for almost two years??! With a small child?! How could anyone survive that?!
Me in 2021: Oh. That's how. 😫😷
Man watching this made me so happy. My son just came to me and I hugged him with all the warmth I could right before I watched this. This was an awesome example to always keep hope❤🙏🏿💪🏿
Is nothing private anymore. Does every single aspect of our lives have to be recorded and uploaded.
took the words right out of my mouth.....
This makes no sense. Your privacy is yours, it's other peoples choice to broadcast the parts of their life they want to.
here we go....
For real
It's all about money. They know exactly what there doing. It's a dam shame. Making profit off story's like this .
The thought of my wee girl having a cold and I worry about her. I dunno how parents of seriously ill kids can cope. Fair play 👍🏻
Strange time for a selfie wouldn’t you say..?
Good luck little girl 💕
And much strength to your parents as well 🥰
Oh god, everybody... PRAY! 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏💙💜💛
Heartfelt video! This song is dedicated to everyone who lost a loved one. ua-cam.com/video/JSbGGiSe3S8/v-deo.html
I'm so happy for them! CONGRATULATIONS!
Demwi duggar what are u happy for she died?!
Leanna Art draws! uhm, I'm happy for them that they got a chance for her to get treated in a special clinic. I had no idea that she passed away. you really think I would be happy about that? you're sick
Demwi duggar wtf she just corrected you if any thing your the sick one dude
I did not know she passed either. Such a tragic story.
but she didnt die?? She got accepted into therapy...
This video was very emotional to me. It brought tears to my eyes. I have 4yo daughter, she's everything for me. I haven't seen her for 20 months now, I'm not allowed, I'm still fighting but I've lost all hopes recently that I will ever see her again. Life without hope is just vegetation... Love for all, Rafal (Amelia) 💜
Have you seen her now?
Shit like this should be private..
ahh shut the fuckup
BULLY -XICK- agreed
The only way to get funding for research is to go public and let people know there is a problem, or that they are not alone if they are also afflicted. Your comment is completely ignorant!
This is an advertisement for a program apparently, so, this is how they get their program's name out there.
Oh shut up. Who made that fucking rule? It's a happy moment. Pissy patty
this makes me feel grateful for even small things in my life because you realise how many people are struggling all arpund the world. god bless this beautiful family ❤
The girl didn't die
Grace Mcneil YES SHE DID YOU IDIOT
She didn't die. She got accepted into therapy. There is no update about her dying. So, you should apologize to Grace for calling her a mean name.
The amazing Miya she didn't die she was able to get a little hope again
The amazing Miya pretty sad when an adult tried to correct a kid yet fails hard at it.
Grace Mcneil n
Amazing parents you are. I bless your family with love and light.
Thank you for your comment. It is appreciated.
I feel so bad for the people in the U.S, Over here in the UK we don't have to pay for this, no hospital bills, NOTHING. It's disgusting how the U.S makes them pay to survive, truly heartbreaking.
Unfortunately I’ve fallen down a rabbit hole of videos like this today. The world is hard enough on all of us. Be kind.
God is so glorious. Nothing more glorious than putting a child, and her family through torture and suffrage. Wait. Maybe he is a story of a monster. Whoaaaa. Grow up, you people make me sick. The doctors saved her, not a giant fairy man.
Nick Humanity is the greatest invention of this universe. God is the worst invention of humanity.
Nick
May God bless you both.
Wow 🥺 I just can’t imagine. My daughter has Type1 Diabetes and she’s soon to be 18yrs old.. so many times I thought I’d lost her… she hates being a diabetic, she hates having to prick her fingers , she hates being insulin dependent, she hates the feeling she gets when her sugar drops to 40, she hates when it’s 300+ she just hates the word Type 1 Diabetic. I can’t say that I blame her or that I would feel any different. But , reality IS, is that she most definitely has T1D. And will be for the rest of her life, unless God decides to work a Miracle in her favor. Everyday alive is a Miracle. I’ve wore a path out from my bedroom to her bedside to make sure she was still breathing in the middle of the night. The past 4yrs has been nothing short of a lot of low moments. But the Good always outweighs them. I Thank God he seen me fit to Bless me with an Angel such as my daughter. I’m Praying one day she will value herself as much or more as we value her.. 🥺
As a parent and now a grandparent, this just tore my heart apart. I am sitting here crying trying my best to understand the pain these parents went through. God Bless them all.
Literally sobbing in my car with my baby in the back seat … she and I both got very sick at the end and after pregnancy she was in and out of hospital but she’s nearly one (in 2 week) and doing AMAZING (PRAISE GOD) …. But THIS- watching your beautiful three year old wither away - excruciating.
Imagine using the possible death of a sick child as a clickbait.
Sickening
They didn't.....they said the fate of their DYING child because that was fact in order to raise awareness and funds. To call it clickbait is a little ridiculous.
I'm Eliza's Dad. We recorded this because we run a non-profit Cure Sanfilippo Foundation to advocate for and fund research for a treatment or cure for Sanfilippo Syndrome. In 2014, we realized that personal, authentic and unrehearsed moments are particularly compelling (just the way the world works today), because a video on our story raised over $2M for research for children (www.CureSanfilippoFoundation.org/video)
, which helped fund 2 clinical trials that have treated 30 children now. The interviews were unrehearsed on that video. Any time during our journey where we feel a moment is going to be special, we video it so that perhaps we might use it to spread more awareness to gain more funding for research for the so many children suffering and in need of a chance at life. I knew this phone call would be either: 1) Yes, she passed her screening tests and will be getting this experimental treatment, or 2) No, she did not pass the screening and she would not get the treatment...the only thing out there that might give her a chance..and we would be taking her home to know her certain degeneration, dementia, and death. You get so used to it, you don't even remember the camera is there. We will film and post any personal moment if we feel it will help the cause to Cure Sanfilippo and get more funding for clinical trial options to save children. I'd argue we'd be not doing everything we could, if we didn't film and post these moments. We used to be a private family, but we've had to change that to try to get attention for this rare disease. I truly hope no one ever finds themselves in the position we and other families are, and the desperation of having your beautiful child with a rapidly degenerative terminal brain disease with no cure or treatment. Perhaps you understand now why we posted this...even if you don't agree. Perhaps not still as well.
Why is this being filmed…? Feels very intrusive and wrong.
god? Prayers? No. Science.
You should give a description because I don't know what is going on.
HDaviator it said in the video
He was joking, dude. I think you missed that bit.
@@juliea9833
🛫 that flew right over lol
Tears came into my eyes the moment I saw her mom crying 💔
It's Been 3 year's This Video was Posted..
Can Anyone tell me ""Is She Alive??🥺🥺""
I think she passed away
@@harryt2284 actually she didn't die. She is now 10 years old. Check out this channel's website.
@Leake Pouliton I know She's 10 this year
@Leake Pouliton 💀
She is alive and doing well.
This is an amazing story. Even the music is amazing and I hope I can learn the piano one day. I wish the family the best in life.
All these comments below are about covid..and opinions. UGH.
*How is this little girl? ?*
*I'm know that their are only 1-3 year old comments, but when this gets recommended, we won't be able to see our golden comments.*
Indeed
0:31 melted my heart. I haven't watched all of it yet. That was just such a precious moment.
1:30 is where they get the call / their answer
People can say whatever they want about Brazil, but even though its health care isn't the best in the world, I'd say it's the best in all of the Americas.
Looks like my eyeballs are set to "evening waterfall"
Oh thank you lord as we pray may you keep this girl alive as for everyday xx god bless your beautiful daughter and this amazing family
When I lost my daughter I lost all hope & faith it took me a very long time to even stand up straight and even still till this day am I still Recovering..
DADDY LOVES YOU MIA 🌠
Jesus loves you more than anything and He said in His Word, the Bible, that He has a peace to give that the world cannot offer. I would love to share my best friend's story with you and pray that you will find true hope and comfort that only God can give.
Precious Memories-By Sonya Lakey
Family Story
Little did our family of six know that Friday evening, September 24th, 2021, would be the last night our family would be complete. We laughed together, played games, sang, and enjoyed listening as our 16-year-old son, Ethan, played the piano for us. I packed a lunch for Ethan for a church mountain hike he was going on the following day.
My mother (who was visiting from out of state) and I woke early with Ethan on Saturday morning. He hugged me and smiled, never pulling away or rushing me. He got in the car, waved, said he'd see me later and he loved me. It was hard to watch my "new driver" heading out on his own that morning. As Ethan pulled out of the gate, I turned to my mother and said, "It's just so hard letting go." Little did I know how much "letting go" I was really doing. That was the last time I saw Ethan. He did not make it home that evening.
That afternoon, a friend tried to contact my husband, leaving an urgent message to call him back. He tried several times to return the call to no avail. As we were preparing supper, an overwhelming feeling of deep concern for Ethan filled my heart. I quietly blinked back tears. I glanced out the window, half expecting to see a police officer pull up to the house, but no one arrived. However, within a few minutes, a patrol car DID pull into the driveway. In my heart, I feared the worst. My husband and I went out to meet the officer, who confirmed our fears. Hesitantly, he told us our son had fallen off of
a bluff and had succumbed to his injuries. Our hearts were crushed; they still are.
Yet, in all of our brokenness, deep, continual grief and loneliness, our family has such a blessed Hope and assurance that we will see our dear son and brother again. You see, when Ethan was a young boy, he was saved; he put his faith in Jesus alone to forgive his sins and to take him to Heaven when he died. He realized some very important truths from the Bible that he would want to share with you.
His Story
Everyone is a sinner. Sin is any violation of God’s Law. God is holy, just and righteous, and He cannot allow sin in His presence. Ethan realized that he - like all of us - had sinned; and his sin separated Him from God.
“For all have sinned, and come short of the glory of God; ” (Romans 3:23)
“Wherefore, as by one man sin entered into the world, and death by sin; and so death passed upon all men, for that all have sinned:” (Romans 5:12)
He understood that, because of his sin, he deserved to spend eternity in Hell.
“For the wages of sin is death;” (Romans 6:23a) [Wages: price]
“But the fearful, and unbelieving, and the abominable, and murderers, and whoremongers, and sorcerers, and idolaters, and all liars, shall have their part in the lake which burneth with fire and brimstone: which is the second death.” (Revelation 21:8)
Ethan believed that Jesus, God’s Son, paid the price for all sin when He died on the cross - because His sinless sacrifice was the only thing that could satisfy the just demands of a righteous, holy God. Jesus was buried in a borrowed tomb, but He arose the third day, triumphant over sin, death, and Hell. Jesus is alive today!
“For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.” (John 3:16)
“For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast.” (Ephesians 2:8-9)
Ethan was sorry for his sin, repented (turned), and received by faith the free gift that God offered to him.
“For whosoever shall call upon the name of the Lord shall be saved.” (Romans 10:13)
“...but the gift of God is eternal life through Jesus Christ our Lord.” (Romans 6:23b)
Because of this great salvation, Ethan lived his life serving Jesus. He worked hard to spread this Good News to the world. He is alive in Heaven with Jesus today; and because of this great HOPE in Christ, we know we will see him again soon - not because he was a great kid, but because of his faith in the great Saviour!
“And I give unto them eternal life; and they shall never perish, neither shall any man pluck them out of my hand.” (John 10:28)
Your Story
What about you? What if you had fallen to your death that day - What if you were to die today? Where will you spend eternity - Heaven or the Lake of Fire? There will not be any parties in the Lake of Fire. It is a place of eternal torment for those who reject God's Son.
The Word of God is very clear that there is only One Way to Heaven.
“Jesus saith unto him, I am the way, the truth, and the life: no man cometh unto the Father, but by me.” (John 14:6)
We did not know that Ethan would step into eternity that day; however, because he put his faith in Jesus alone for his salvation, Ethan was ready to go. Some day - perhaps today - you will take your last breath here on earth, and you will step into eternity. Where you spend eternity is determined by what you do with Jesus Christ. Will you accept Him or reject Him? You are not promised another day or another breath. Eternity begins soon - Are you ready?
“...Believe on the Lord Jesus Christ, and thou shalt be saved…” (Acts 16:31b)
“For whosoever shall call upon the name of the Lord shall be saved.” (Romans 10:13)
“(...behold, now is the day of salvation.)” (2 Corinthians 6:2c)
*********************************************************
If you need more help or if you would like to send a word of encouragement to the family, please go to:
facebook.com/GITM-Foundation-113997824650357/
If you don't have a church to attend, we would love for you to join us in person @ Liberty Faith Bible Church in Norwood, Mo. every Sunday morning central time 11:00 A.M., Sunday evening 7:00 P.M., and Wednesday evening 7:00. P.M. where you will hear sound, biblical preaching from God's Word as well as uplifting, godly music.
Or you can join our livestream family at:
libertyfaith.net
Facebook: Reg Kelly-Table In The Wilderness
Sermon audio: Liberty Faith Church Pastor Reg Kelly
UA-cam: Liberty Faith Church Reg Kelly sermons (not livestream, but recorded)
@@kelleymcfadden9675 Fucking nutjobs...
glad that no matter how bad it gets, I will never record myself crying over devastating news
I bet COVID has reeked absolute havoc on them.
I wish this babygirl a full recovery and hapoy healthy life she's so beautiful🙏❤️😊
Thank you
@@SavingElizacom God bless you 🙏❤️...im a survivor, and i have my daughter with autism...its so hard because shes adult now! But healthy...may God bless you 🙏❤️ its a beautiful angel 😇
"Their prayers were answered"
The Doctor did everything.
No matter what…the Lord is in charge.
2016:nah bro not now u ain't ready
2017:nope
2018:u just saw infinity war dont watch this
2019:ok now you watched endgame your ready 👌🏻
This was very heartwarming. I hoped at the beginning of the whole video that everything would be successful. I admit I was afraid to hear to whole video. Thank God the parents believed in God, and didn't give up. God responded to their faith and answered their prayers. Never give up and keep your head up no matter what. May God continue to bless this family.
Years ago this would not have affected me much but now being a father of a almost three year old beautiful boy and a one year old just as beautiful daughter I seriously could not hold back the tears out of pure sympathy for these parents and the relief and hope they were just given by that phone call.
Thank you.
HOW could they say NO?? IM an ICU nurse- I've watched ppl fight to live, try to die, beg for life- etc..
We cant drive a car without car insurance, but our LIVES ARE NOT GIVEN protection unless its paid for ? Or, someone else,who will never meet us, decides our fate. SHE'S beautiful. Stay Strong& ty for sharing. 🙏
Ok, who keeps chopping onions in here......
My heart eternally breaks for families that have to go through this horrific nightmare. Raising children is supposed to be a tough but rewarding and exciting part in your life, it just saddens me the amount of stress and hurt these parents feel when it's supposed to be an exciting chapter. I pray for all children and parents across the world battling illness.
God answers prayers and Heals!!! Prayers still be with you. I know this will be a long journey but this is a start and Gods got your back. So does everyone else out here praying for your little girl. :) xoxoxox
Thank you, Lord. Thank you for helping this child. There are so many people who need you, and most of all, we pay for the people they don’t even know that they need you. God bless this family, what a Trumatic thing to go through. And then to think, there are so many babies that are aborted. Thanks for sharing this video
Helping? He’s the one that made the child sick in the first place.
so did she get her second chance. did the trail work??