Saving Mila - Time is Running Out!
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- Опубліковано 23 вер 2024
- At age six, our daughter Mila was diagnosed with Batten Disease-a rare fatal disease with no cure... yet.
With your help, we can fund necessary research and clinical trials to give the hundreds of children like Mila a second chance at life.
For more information, please visit STOPbatten.org.
UPDATE: Since launching this video, we learned that Azlan does not have Batten Disease. Such joy amidst the pain. Please continue helping us in #SavingMila and other children suffering from Batten- gofundme.com/savingmila.
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May God bless Mila's soul. Amen. Every like equals one prayer. I better like my own comment.
Lord i ask of you to heal mila and her family as i pray for her
Amen
Sometimes he doesn’t heal them for the better. He always has a plan.❤️
I am asking my God's to pray for her
Well we don’t know that for sure! 👌👍🙂
@RichMapping
Not everyone follows the same religion. Not everyone is religious. Please respect that.
May God bless and heal your precious daughter. In Jesus' name ~ Amen.
shellmj1 Amen...!
shellmj1 AMEN
shellmj1 amen!
Amen
shellmj1 Amen!
Pray for her
1 like = 1 prayer for Mila
NO.... Just praying is a prayer for Mila. Do you really think God checks UA-cam "likes" to see who prayed? What is happening to the youth these days?
I am praying for mila. And T Sommers god can see everything even you tube and you might not understand this but god loves you just know that and I am praying that you will learn that soon 💕😢
I wish I could pray 100 times
Khalid Mohammad Fuck off
Don't scrounge for likes here. Actually pray for her
I feel so bad for mila😭 I can’t believe someone disliked this
She's beautiful I'm so sorry to hear of this disease. Mila is a true fighter. Bless your family.
Yeah it's so sad to hear that it's so emotional 😭😢😥
me too, its really sad because she seems like a normal kid ,but those signs they just let you know something is wrong
😩😩😩it’s so sad 😞
Destany Ik I am lazy but is she ok I couldn't go through the comments because I would cry my eyes out I get really emotional with stuff like this xxxx May god be with u and ur family is she still alive
Destany ya
I feel so sorry for Mila and her family they must be so worried
Ava jean my name is ava to
Ava Jean I’m crying
I prayed for her
How is mila doing
Now i love her
I don't want her to die
Amber Bloch yeah me too
Same
Me eather I want to help so bad
No one want that 😏
@@krystalstephenson9867 donate to organization.
Its so sad....WHY WOULD PEOPLE DISLIKE THIS!!!
Bc people are stupid and heartless and cruel this world has no heart anymore 😢
Fakhra Shaheen Maybe they need a like = a prayer. That always works apparently
Ikrrr
@@princesszelda8914 they cried so hard they thought they taped the like button
They have no soul
She is so adorable and strong! Nothing can stop her!
The People Who Disliked, Are Heartless. This Family Needs Support, Right Now They Need The Support That Somebody Would Get If A Family Member Had Just Passed. Mila Needs Help, They Need Support to Get Through Whats Happening To Mila. Everybody, Just Please Don't Hate and Be Kind And Supportive To Mila's Family.
Peachii.Slimes_ why do you do this you started every single word with a capital letter wtf man? 😅
STOP SAYING THEY HEARTLESS!!! IT COULD HAVE BEEN BECAUSE IT WAS TOO SAD!!
You never heard of an opinion..
You are so right
oh 😔
Poor thing she is a beautiful, brave, important, sweet girl and i wish that she never had that horrible disease 😿😭
Pithy Cupcakes63 I feel bad for all children who have it no one should it's sad. I feel bad for everyone.
She is so brave. I'm proud of her
I actually can’t stop crying she’s such a sweet happy girl and the cutest it’s a shame to see what her family are going through like this comment for Mila and her family xx❤️
Get well soon mila
If your sad watch funny vids
Thats what I do
I 👍
Something tells me your "I actually can't stop crying" comment was a tad exaggerated.
She is beautiful
This brought tears to my eyes I would hate having to be in a position where someone I love was like this but with all the love you have for her she is so lucky to have a great family this is such a touching and heartbreaking story i wish all the best for Mila ❤️😭
What a beautiful child! Bless her and her family Father 💞💞💞
God bless this family. Sending love and prayers to your family from me in Scotland. 💞
☀️ Ｓｕｎｎｙ Ｄａｙｓ ☀️ it should of been a sunny day!!🙁😔😭
☀️ Ｓｕｎｎｙ Ｄａｙｓ ☀️ if only it was sunny
Jessica Lee's boyfriend keep it to yourself
I’m from Scotland 🏴 to
Who ever disliked this is a disgrace get respect
Sometimes when you click "like" it's a way of acknowledging that you saw the video as would be in this case. It's also a way of keeping track of how many times this video is viewed.
Maybe they pressed dislike because they dislike that this child has this illness?
Jessica Lee's boyfriend holy fuck u r so horrible maybe if u don’t like this and wanna hate on it go watch another video like how to not be horrible
Jessica Lee's boyfriend how could you say that!? What if that happened to you!? How can you be so disrespectful!?
Jessica Lee's boyfriend just shut your mouth
I cried so much watching this I'm so sorry Mila is so strong and I also have a rare disease called nephrotic syndrome otherwise called a kidney disease I was only 4 or 5 and one day I asked my mom if I was going to live and she said yes and the next day they thought I might not make it and my mom was crying and I said "Mommy what's wrong?" and she said that I might not make it and I started to cry too and the next day a miracle happend and the doctors said I was going to live and we were so happy and I still have it to this day and we hope that it will go away. I was glad to share this with you😊
God Bless You!❤️
Kaleigh Mcbride I’m so happy that your still alive.😙😙😍😍😁😁☺️☺️😊😊
Hey my name is Sarah I’m 13 and I felt so sorry for mila so I told my parents, and great new they donated a 100$ ❤️💖
One like =a pray to her
I cried in the middle of this and I'm only 11 my friends friend developed this at the age of 1in a half I cried when the news appeared. My GMA always said I had a good heart until she died and I don't want you to go through it and I want your daughter to live until she's old so..... I am going to try to donate at least $35 to help not making promises because I'm 11 bless your BEAUTIFUL FAMILY AS TO YOU PARENTS GOD IS WATCHING OVER JUST BELIEVE AND YOU'LL BE A OK HE KNOWS😭😭😭😭😭😭😓😓😓😓😓😓😚😚😚😚😚😚😚😚😇😇😇😇😇😇😇😇😇😇😇😇😇😇👌👌👌👌
faythe gray I’m 10 and I don’t have Nathan diesese but I have diabetes but this can really kill you I wish I could donate but im poor and 10
Amen
Faythe gray you sound like a wonderful girl full of love and compassion even if you arent able to help with a donation im sure milas family would love some prayers ❤
I'm 11 too
I also want to help fight batten diesase
my heart goes out to you. my daughter just been diagnosed yesturday with late juvenile disease. been going blind from prep and epilepsy and took them till she is 13 to get answers. hope you get the support and care you need. as we start our journey with this evil disease.
I'm so sorry to hear about your daughter. My heart breaks for you. But don't give up hope! Talk to scientists and other families with her type of Batten. I will send all of my love and positive strength to you and your family.
please dont give up my sister was diagnosed with cancer she just died four weeks ago im only 11 years old im from denmark she was 2 years old
Charlotte and Gwen Gray (curebatten.org) - gene therapy / CELLULAR THERAPY / SMALL MOLECULE THERAPY.............CLN6 clinical trial.........they have other info on supplements that can help with the disease too
facebook.com/Garrett-the-Grand-Batten-Fighter-1500339080209442/
(there's a video about gene therapy for Batten at University of Nth Carolina)
see if there's any useful info at curezone.org (search the forums)
L-Carnitine, R-ALA and adeno-B12 can repair nerves
Batten disease can be slowed if treated with vitamins C and E and with diets low in vitamin A
seizures, neurodegeneration and other issues can be helped by medicinal cannabis oil (Charlotte's Web strain - see Stanley Brothers)
look up low dose naltrexone, see if it can help (lowdosenaltrexone.org)
November 2006, neurosurgeon Nathan Selden, pediatrician Bob Steiner at Doernbecher Children's Hospital at Oregon Health & Science University had purified neural stem cells injected into brain of Daniel Kerner, a 6-yr-old child with Batten disease, who can't walk and talk. This patient was the first to receive injection of a stem cell product from StemCells Inc. By December, the child reported signs of speech returning.
March 2014, the University of Rochester began trial of mycophenolate mofetil
not sure if a ketogenic diet, R-ALA and curcumin with black pepper extract(clear plaques on the brain) can help but they're very good for a neurodegenerative condition like Alzheimer's
en.wikipedia.org/wiki/Neuronal_ceroid_lipofuscinosis (this link has several treatment options)
Abnormal accumulation of lipofuscin is associated with Batten disease,
google ''how to reduce lipofuscin'' and certain online forums suggested DMAE, alcar, piracetam, centrophenoxine, selenium, Acetyl l carnitine (helps flush lipofuscin)
Charlotte's Web (medical cannabis oil) for neural protection and B12, B6, Vitamin C, DHA and Gerson Diet with minimum meat/dairy. Infra-red light 20min daily and hyperbaric oxygen chamber.
Bob Steiner - Stem Cell therapy (also Joanne Kerner)
The therapy is called Brineura (cerliponase alfa) and is a treatment for a specific form of Batten disease, CLN2 or TPP1. It is the first FDA-approved treatment to slow loss of walking ability. Although not a cure, it has shown to stop or delay the progression of Batten disease by replacing missing enzymes.
David McWaters I am so sorry
I was your 100th like and yes I agree
If I was you be so sad that I would cry for ever😭
This made my cry!😭
STOP confessing and start BELIEVING that THERE'S A POWERFUL GOD WITH YOU. ABSOLUTELY NO sickness is impossible for Him to Heal. Pray to GOD and listen to His teachings through Andrew Wommack Ministries. We LOVE YOU MILA.
ANNEROSE GATHATHU Bish, if there was a god, he wouldn’t just sit around and let little kids like Mila get this bad, and get this close to death. Nor would he let thousands of innocent people die because of terrorist attacks.
Don’t worry, you can have your religion. I don’t believe in anything the same way different religions believe in their god. Just expressing my opinion for once.
Seriously? I mean it is fine to have a faith in whatever but don't use faith as a shield to keep you from helping others. All these people supposed to be living as Jesus did just tell others to pray to Jesus rather than helping one another. Imagine if people stopped just praying and donated a couple dollars and a prayer. Faith is not an excuse to be selfish or to value money over everything else. It is fine if you cant donate or just dont want to but please dont use God as an excuse to not help others with anything other than lip service and judgement. Prayer is nice it is, but if you can also do other things for other people. Also some likely millionaire scam artist is the very last place one will ever find God. God hears prayers himself and you dont need to give money to some church to speak with your maker. If cancer and disease got all the money that these television hucksters received there would be no more suffering
- NetherKitKat - Sometimes he does things that you are not able too understand. He is so powerful that sometimes we can only see half of the
picture. Have trust in him. He loves us all! He would never just let us suffer. There is a great reason for everything he does. He is just too great for us to sometimes fully understand it at first, but if you have an open mind and trust God, you will see all the miracles and wonders of life❤️ Love Jesus and God❤️
avaorchid l don’t think that’s true. If God has a reason for all the suffering in cancer and diseases (which he does) and if he wants it to go on, no matter how much money we donate, if God wants it to go on, we would still have sicknesses. In the end, God decides what happens in our world because he is our Great Lord. He has a reason for everything he does even though some people don’t see it at first. We can’t change the decisions he make. We just have to trust him and know that he loves us all and always does the best for us❤️Trust God❤️
I’m so sorry about a year ago I donated $4503 most of my money to help a little girl
T&A Gaming if only everyone was like you kind and genourous
Kelly pin I agree
I agree
Aww she's so pretty and brave!
Hannah The Kawaii Potato I agree with you
God bless you no matter what keep positive and hope .god and jesus will help you through this
A men
Aleeza Malik yes! Spread the love and blessings!❤️
She needs donations for her dease.
@Aleeza Malik she needs donations for her dease.
I so sorry for you I be praying for you 1 like =1 more chance and 1 dolloer
Syuo bnag uq
JUST STOP USING SOMEONES DISORDER FOR LIKES
Roselia Pichardo Fuck off
Stop using her for likes
Im praying for mila,i hope she can recover
Tragedy our prayers were dashed, she passed away at the age of ten
Omgomg such a sweetheart I'm so sorry
So sad for this family. She is such an adorable little girl. I'm so sorry for them all.
Tha
Same :)
This Mila's situation is heartbreaking, but our hope is unshaken. I'm still trying to share your appeal anywhere, dear Julia and Alek! With love.
Thank you! It means so much to us.
Love and thoughts are with you as you care for your precious Milla. Life is not fair.
Cate C i
Jessica Lee's boyfriend shut up go complain elsewhere u devil
RIP Mila. Fly high sweet girl.❤
did she die ?
@@MichaelJackson_101yeah 😢
@@Sah-m2v oh no when?
@@MichaelJackson_101idk but it's so sad
@@MichaelJackson_101 In 2021, at just 10 y/o, despite personalized treatment to slow the progression of this awful disease.
The only reason there are dislikes is because everybody's eyes were to blurry with tears!
I'm so sorry I can't donate bcs I'm only 11 but I wish you the best of luck in future through the good and the bad. Never loose hope your all true fighters and an inspiration to everyone. Love and support always Kayleigh XX♥
Ur so sweet🐰🐱
Kayleigh Simpson im same cos im 10
I disliked it's just to sad for me...
Same but I will try
Kayleigh Simpson same
Lord Bless her with a miracle.
Why are there dislikes?!?!?!?!?!?!?!?!
Hallie Vlogs Because some people are disgusting.
ikr
Because the don't have a heart
Hallie Vlogs ikr
mabey because there and about what happend?idk
She is soo cute and sweet! Praying for her.
Guys I know this will be cheesey but I am a cometitive musical theater dancer and are first comp is dance for a cure and i am going to sing and dance and act my hardest for little Mila she is such a little sweet heart and i would hate to see her go I love you Mila stay strong
What exactly do"cometitive" musical theater dancers do? Is it anything like what "competitive" dancers do?
T Sommers she was trying to be nice so why do you have to ruin that. Obviously you know what she meant
So heart breaking.. What a precious soul she is. My Prayers are extended to your entire family
Just for fun 7
I’m so sorry😢
I believe in you mila keep fighting!
CloudsGirl922
Ya fight
God bless please help this kid please make this girl fell good.i am crying
She’s adorable she’s so Brave God Bless her
I’m crying I hope she gets through it
Much love to the family. This is so sad and no kid should have to go through this, they should be able to watch TV and play with toys. Hopefully she gets well very soon. Good luck to the family and friends. God Bless. #SaveMila 🙏🏼
#savemila....WE LOVE YOU......IM CRYING!
Fly high little angel!!❤️🦋
OMG I LOVE HER 😍 1’000’000k prayers and love to your family
I honestly wish I could donate but I can't my family is going through a tough time but God bless this girl she has the spirit of an angel
The trial is no guarantee of a cure for Mila. I would ask people to make a conscious intention or prayer for this little girl's health. Focus on her when she was active and healthy and ask for more of this energy. I also send the family my prayers.
Treatment slowed the progression of this terrible disease, but sadly it claimed her life in 2021, at the age of just 10 y/o.
I can barely breathe when this stuff happens it hurts my heart
GOD BLESS HER AND HER FAMILY
By the grace of Almighty God little Mila will be healthy again. God bless you sweetheart your in my prayers.
Bless her family. She’s a strong, resilient trooper. I have faith in her and her family.
God bless her❤️🙏she’s a strong girl💕
I almost cried!
You thought about jesus?
same
Me too
Dawid Polasik ♥♥
Smriti Krish me to
She will live just pray to god he will help you get through anything ❤️❤️❤️❤️❤️❤️❤️
She needs donations for her dease not just prayers.
We need a cure. This beautiful and lovley family, they cannot lose there daughter, pray to our beloved god and your will be sure to have your beautiful, cheerful Mila back once again.
I'm so sorry. God bless you and your family. I hope she gets better 😟😟😟
I cried my sis died cause of batten diesaea at 4
Squeesh Yum Yum my her soul rest in peace~amen
Squeesh Yum Yum I
im so sorry for your loss. I wish you the best
Squeesh Yum Yum I’m sorry😔😓
me too
I will be praying for you mila your so beautiful keep smiling
I love this little girl she is so cute and so smart and she’s THE BEST
God bless your daughter.
💕💕
She’s so cute it’s unbelievable how much she’s changed God bless you don’t listen to the ones that hate being who you are and always love😢🙏🏼
This has just made me cry 😭 and to see a beautiful cute girl having that I feel heartbroken
😰😰 i will pray for her!Every night :( She seems so sweet i wish i could help her. Shes so cute i feel so bad for her .She seems so out going.Stay strong and never give up
she is adorable. Its really sad, more people should donate. I pray for hope.
Im so sorry about mila we will never libe her we will have her in aré heart
Poor mila she is such a fighter if I could I would take milas fight for her she has a personality of her own she has an amazing name and family listen to this M is for mila I is for I love my parents L is for loveable A is for anyone and anything can change and do something they want to do in there dreams SHINE BRIGHT LIKE A DAIMOND
God bless Mila and your beautiful family ❤️🙏 Also happy holidays ❤️💕
God bless your family. I'm so sorry to hear that Mila has this disease. Stay strong. They will find a cure for this no good disease. Do everything you can to make yourself and your family happy❤
No one should be able to go through such pain bless your family and her future
I usually never cry during a movie or video but, this made me cry. She’s adorable, I believe there could be a cure
Aw good bless her I hope she feels better, I hope she is okay.poor girl
I am so sorry for what is happening to beautiful Mila. Nobody deserves to live this way. I really hope all of this can be cured and hope that she will eventually be able to see talk read and walk. (The sooner that she can read see talk and walk the better. ❤️❤️❤️❤️❤️❤️😘😘😘😘😘😘
This is so sad I almost cried
Bless you guys ❤❤❤
So sad I’m only 12 so I can’t donate... I hope she feels better and lives a looong time 😭😭😢😊😭😢
God bless Mila and her family😢😢
I'm so sad she is so cute and beautiful I'm sorry you had to hear that from them
she can stay strong and do it believe in her self to lots of people have died in my family hopefully she doesn't sending love and prayers from me in England
I am so sorry to hear about this. I hope this one isn't fatal..I am hoping for a real miracle..
im so sorry to hear that
She is so sweet and so beautiful and so happy and amazing
I love her she is such a great girl and now that she has that disease it’s just heart breaking I like 1 pray
My heart broke watching this I was 😭 😢 crying
I am actually crying. 😭😭😭😭
May always fight with no struggles,
Is kind and sweet no matter what rumbles,
Life isn't failed,
At all, not without a fight to the end.
That's so nice
I will prey every day for Mila she does deserve this.
This made me cry for 2 hours
I am so sorry for your family😢 this reminded me of my uncle who didn't want to live anymore and he took an injection to make him get cancer and about 2 years later he died😢😢😭😭 he basically committed suicide 😭😭 his name was Johnny
Oh im so sorry for your loss
I am so sorry.
Dont worry! My sister she is disabled... and she has this riend called Annie and she has a differnt disease but it exacly the same so she cant Talk,Walk,move,eat so she has to get her food mixed up like a smoothie and drink down a pipe... she has 3 carers It started when she was 9 and she has chance of dieing soon in maybe about next year ggod bless your daughter! i wish they were friends (she is 19)
My sister already passed away 😭😭
@@maerohani5061 oh no.. how are you holding up love?
Aleeza Malik the fuck I have high level autism sorry but autism isn’t that’ autism is not a desease
Galaxy Duck god bless her! My brother had a sezuire and right now he can’t really talk but a doctor said to me that he’ll be able to talk later on my brother is 20 and I kinda wish my brother, your sister and mila would be friends
Aleeza Malik my sister has autism
This is so sad
Your inspiring, beautiful, and so cute...don't let anyone dull your sparkles
Ive come back after years and im so sorry for your loss rest in peace mila 🕊 ❤️
Why is there dislike if you don't care just think it's not fare on her family and friends think about it and what if you family was in the same possession and you had the diese would you like it no so change it to a like comment if you agree to this she is so beautiful
I will care for you but I can’t donate because I am only 12 years old but we still love you and hope you feel better from:hannah
Same... My Name is Hannah too and I'm 13 and live in Germany
I feel so bad for her and her family 😭😭
I will be praying for her and she is so beautiful and happy and so brave
I'm so sorry for poor, beautiful Mila!!!!