Every Life - Mila's Story (Full)

[@idontknowmuch3441]

Her family was able to raise over million dollars to develop this medication. Truly amazing. I donated money and I was homeless at the time. My prayers to this family and everyone suffering from this horrible disease

[@chelciewentzel8191]

you’re so sweet🥺 i hope things are better for you now

[@justicewillprevail1106]

Good karma will follow you.

[@bluey9513]

I remember watching a video about mila 4 years ago I never lost hope that she would stay alive :( sadly she died in February 2021 Rest in paradise mila 🌸

[@melaniewalker5226]

Oh that's so sad to hear. RIP Mila.

[@magnificent6668]

Rest in peace sweet Mila.

[@brandymendoza1390]

All I can say is WOW what a fantastic Mother Mila has. I wish I had an ounce of her patience. Beautiful and touching story! Please keep us updated!

[@chanabayla1823]

She's dead

[@annekalunn8339]

She passed away

[@maureenpereira1948]

Amazing story, I am so sad Mila lost this battle, Rest In Peace little angel in the arms of Jesus. 🥲❤️🙏🙏praying for Mila’s parents and family.

[@melmma6938]

I love this, but It hurts as well. I wish it came sooner . R.I.P to all the babies who got their wings.

[@jeromecabral8440]

She is one brave little girl. I wish her the best in the future

[@judahgirl07]

This just busted my heart. Sending love and prayers to Mila’s family. God bless and keep you.

[@JourneyInTheCity]

It’s so hard knowing that in February you passed. Oh sweet Mila. I know your up there dancing around with Ally!

[@dadycreations100]

So sorry for her family. About Mila I wish her limpid soul is in a better place now.

[@darylb889]

Rest in Peace Mila, you won't be forgotten.

[@devonseamoor]

Thank you for sharing this heartbreaking/heartwarming part of this family's life with a daughter changing so dramatically, due to Batten disease. I didn't know of it until watching this video. How brave all members of this family are, what a huge change this must by on all levels, to live every day with a determination to do all you can, and also go the extra mile to make it a good day. I pray for this family, that the genetic treatment Mila receives will reverse the damage far enough so that she enjoys life again.

[@CrystalCat24]

I heard she passed away a while ago. But she was able to live a couple more years because of all of the hard work and risks these doctors and scientists were willing to take!

[@pattyfreeman5819]

Praying for you all right now!

[@belindakloppers3698]

May God Bless Milla, and your familly

[@gypsy3446]

What an amazing doctor to help so fast, and he has such awsome personality as well. I'm very sad to read that mila passed in 2021, rest in peace now sweet 👧 girl..

[@thethreeadventures5944]

i'm so sad but happy at the same time

[@charliecharlton9782]

So very difficult for a mother who gave birth to a perfect child to watch helpless as her baby's cognitive functions decline through this awful Battens Disease.

[@sallymccoy6286]

Thank you mama for not accepting "No" from the FDA to allow the trial treatment for Mila. Look how she has progressed with time.❤❤

[@stephaniecarter8416]

Yes, please how is she? My prayers are with you!!! God bless her!

[@tox1cwill523]

Unfortunately she passed away earlier this year 😔

[@paintingwithcammiebourke3984]

@@tox1cwill523 oh man that's so sad I hope her family's doing okay

[@ramonam8577]

Sending love to Mila and her parents

[@carolpainter4305]

Sending love and best wishes to you all from the UK. God Bless you for your strength your determination and your devotion as parents. Potentially could make a difference to so many children just like your beautiful daughter Mila's.

[@pennykrier3960]

Would love to hear an update on this courageous sweet girl❤️

[@CrystalCat24]

I heard she passed away a while ago. But she was able to live a couple more years because of all of the hard work and risks these doctors and scientists were willing to take!

[@maureenpereira1948]

Amazing story, I am so sad Mila lost this battle, Rest In Peace little angel in the arms of Jesus.🥲❤️🙏 praying for Mila’s parents and family.🙏🙏

[@deborahnunn2394]

CHILDREN SHOULD NEVER HAVE Anything like this .KIDS ARE READY FOR LIFE . Prayers for kids that are sick

[@flossyflue4305]

What a cruel disease, to watch your own child deteriorate. I pray for you all, I have a genetic eye condition that’s debilitating in every day life since birth. To see you all move mountains for your beautiful little girl was very tough to watch all of her abilities deteriorate so heartbreaking. You loved her so much. God bless you all.

[@southernbelladonna78]

Does she get better or not? Every story about this lovely child ends the same. It doesn't tell you if she will progress or stay the same as in this story and you can't find an update. :( I need to know!!

[@grobanite4ever85]

It is progressive decline and will eventually progress to dementia and death. She passed this year in February 2021

[@idontknowmuch3441]

@@grobanite4ever85 oh no! Her family did everything they could the way this mom fought for her daughter is beautiful and amazing

[@juliapark5133]

Beautiful and inspiring story. I hope Mila is doing well.

[@romeisfallingagain]

a tragic condition. bravo dr yu

[@deborahnunn2394]

Dear GOD PLEASE HAVE MERCY ON THIS LITTLE GIRL AND HEAL HER COMPLETELY

[@chanabayla1823]

She's dead

[@IziGryffindor]

Hi in 2020 how is she? I really hope she's doing well thanks to the drug. Love and best wishes from the UK.

[@southernbelladonna78]

Good luck finding updates on her story. I always try and can't find anything anywhere.

[@IziGryffindor]

@Niamh R source?

[@IziGryffindor]

@Niamh R kk

[@chanabayla1823]

She's dead read the other comments.

[@TheNikolas85]

My sister has child 3,7yrs old and she has same NCL2 right now she has intraverticular cateter she waith about 4 weeks to take Cerliponasa Alfa dose anyone know is it ok? And frst of this how is Mila? Dear parents send u big big hug from Serbia. I know how it is i know how mich this fight is hard . Big big hug

[@Ronoel0823]

hi. in 2020, what are the updates of Mila's condition?

[@bluey9513]

Hello! Mila was okay until February 2020 :(

[@keyw9705]

Weird there's no update. I hope we can learn shes getting better.

[@Katie-wl6xr]

she unfotunately passed away in February of 2021

[@mariaordonez9691]

Endless prayers Mila and her family

[@TyrekeCorrea]

That's not development stopping; that's regression.

[@o.o1163]

This is wonderful💞☺🙏. God bless you and the other children in the future too..

[@virginiaspeciale8641]

What a fantastic story.

[@cochiefemeralds3616]

I had a friend who passed away at 14 years old from batten disease

[@yougotaluvme]

Life isn't fair, life is so cruel at times. God please , no more🙏🏿 😔

[@emmamudie3749]

Rest in peace sweet girl

[@honeybuzzard2843]

What a Beautiful, Strong , Girl. Fly Mila, Fly Pretty Angel

[@henriquedavidjoaopabis7108]

Congratulations to the doctors that developed the drug!!

[@nowsinmunmun4423]

How is mila Now? From Bangladesh

[@grobanite4ever85]

She passed February 2021 this year

[@luciamizerova2292]

Hi mila perens i have daughter age 7 she got cln7 we live in england bud we are from slovakia how you doin wit mila ?

[@tawnypelt1360]

Mila just died a few days ago at the young age of 10. My guess is that Milasen didn't increase her lifespan, but delayed the symptoms, making the decline towards the end of her life more rapid. (I'm not a doctor, so my theory is probably wrong)

[@johncaffrey5395]

God Bless Mila❤❤

[@sabrina19ization]

Prayers

[@songsalon7868]

I Love Smart People. I Love Mila. BEAUTIFUL ANGEL

[@rosah.901]

Beautiful Mila❤❤❤

[@melissaduncan7922]

Is she doing well in 2020?

[@jessyjohny5703]

iam heared sad news. but I am sure this little angel now here God handed keeps.

[@myowncreatedstories]

My daughter is suffering from CLN 1 since 2 years please help me😭 I am from India

[@stephaniesawyer8543]

Stephanie 💜

[@chelciewentzel8191]

prayers❤ she will always be so beautiful and strong and amazing and never forget she’s looking down on you guys so so proud❤ also never forget God and Jesus are so beyond amazing and they have everyone through everything always and forever ♾️🤞🏻🙏🏻💪🏻✝️

[@joyfulautisticjesusfreak1997]

My mind has been playing this over and over again: the parents who yell at their kids don’t realize that their time with them is fleeting. They may not be aware that there are parents out there, whose child is severely disabled, or frequently hospitalized, born with medical conditions, or like this….with life-threatening or even fatal diseases, or worse, dies suddenly. The questions lingering in my mind are: what if they become those parents? What if this was your child And what they may also not be aware of is this: their child is never theirs to begin with; all life, including their children’s, belongs to God. He gives and takes away.

[@brittanycassidy5322]

Look up Mila's Miracle Foundation to Stop Batten on Facebook to follow her journey.She is still alive and battling.

[@CrystalCat24]

She passed away recently at age 10. Her life on earth was worthwhile though!

[@petlifeAmksm]

Great

[@laurazander3012]

Please God save all the children that suffer with battens

[@CrystalCat24]

why did god even create or allow Battens? I mean this with all due respect

[@laurazander3012]

@@CrystalCat24 isn't there a trial treatment

[@CrystalCat24]

@@laurazander3012 there's Milasen, the medicine that they made specifically for her, and it just slowed down the symptoms. For example if she was partially blind she wouldn't gain her eyesight back, it would just slow down the rate of the blindness getting worse. Instead of being fully blind in 2 months, it could take 4 months. She passed away 8 months ago. 😿 Bless her! She seemed like a very sweet girl.🖤🤍

[@jazzy47827]

Sad 😔

[@ruthb.8508]

Poor little angel. So unfair.

[@CocolottiPearson-s3t]

So wait mela got the medicine and she still died? How is that.i thought the drug was supposed to keep her alive.what happend.her mom was rushing everybody and her daughter still died ion understand

[@robynholliday4794]

Beautiful girl ❤️

[@lindathrall5133]

ONE DAY DAY GOD WAS WALKING IN HIS GARDEN HE NOTICED AN EMPTY SPOT SO GOD LOOKED DOWN HERE ON EARTH HE SAW A LITTLE GIRL AT 10 YEARS OLD SHE WAS VERY TIRED HE REACHED DOWN AND GENTLY PICKED HER UP IN HIS GENTLE LOVING ARMS CLOSED HER EYES AND SOFTLY SAID PEACE BE THINE GOD IS NOW GUARDING HER FAMILY

[@joannoeser1861]

remember that these are all little CHILDREN of OUR LORD JESUS CHRIST.

[@debraodonnell6681]

Rip beautiful Angel so sorry for your loss🌹

[@wildecorrea7339]

Wow, wow, this is not fair!!!It brakes my heart😢