Child Battling One of the Rarest Fatal Diseases in the World

[@InsideEdition]

To follow Emma’s journey, or to donate to her GoFundMe, visit linktr.ee/lovetoemma

[@Violet.the.Budgie]

Is she still alive ❤😢?

[@Fenrir.Gleipnir]

Beautiful child and a beautiful and wonderful mother!

[@granmommy11]

​@@Violet.the.Budgie Yes, Emma is still alive. I'm her grandmother and am so thankful to still be able to enjoy life with our happy little Emma 💕 💗

[@Violet.the.Budgie]

@@granmommy11 i dont think i can believe this i have no proff

[@AmberHoyle]

​@@Violet.the.Budgiewhat?? You can't be that ignorant.This story literally came out yesterday and the interview was a month ago. Go follow her page.

[@valentinacardona173]

Such a cruel disease . Not only kills the patients but takes their lives away while they're still alive

[@helianabanes4875]

Yeah. That has to be the worst part of it, especially her knowing she is losing everything.

[@saulehaali329]

😅Bru😂😂 its funny

[@Adrosero]

​@@saulehaali329 Bait used to be believable

[@ashleighscott9888]

@@saulehaali329no

[@KFC-films]

@@saulehaali329no it is not

[@germanshepherd6638]

This is why I’m studying medicine, I want to work in a lab curing disease

[@AxoTheGamer]

Respect

[@MontysGatorGulf]

I have faith in you ❤

[@jessfromdablock]

you're going to change so many lives in a positive way. good luck to you!

[@UT-qu9nv]

thats awesome. my best wishes, keep the eye on the prize , the prize being curing diseases which have not met their arch enemy yet. you will be that diseases's arch enemy / cure .

[@justtryme2020]

God bless you❤

[@conceptiageffrard59]

Sending love to Emma, her amazing parents and everyone committed to her care💛

[@samjane6267]

"Love, Kennedy" is a book written by Jason and Heather Hanson, who's daughter also had Battens disease. After her terminal diagnosis, Kennedy's life would never be the same. But even as her body broke down, her heart never failed, nor did her ability to love. With each precious passing day, more people witnessed her faith and kindness uniting her community. It is very inspiring story.

[@GraceJensen06]

i remember watching the movie when i was younger. it always stuck with me. such an inspiring story

[@leah-michelle5872]

These people need to call the Make A Wish Foundation. I'm sure there is a lot that little child would love to do. And it would be good for the family to make memories.

[@TheCreativeAutistic37]

I agree I had blood cancer and was able to get my wish granted...😢 Though I feel so bad for this whole family terrible ❤

[@pipertarin68]

​@@TheCreativeAutistic37 I'm so happy you have been in Remission 🙏❤️ My Mom, had a really Rare Cancer 54 years ago. She's been in Remission 54 years. May you been Blessed a long healthy Life ❤ Blessings & Love to you all, Piper & Singer a.k.a. My Kitty.

[@TheCreativeAutistic37]

@@pipertarin68 Thank GOD your mother is well too :3 Im am grateful she is since the treatment itself is awful just as much as cancer itself

[@59Schnauzermom]

yes they do while she can still get around. Call Make A Wish

[@pipertarin68]

@@TheCreativeAutistic37 I'm grateful & Blessed My Mom, Survived. I would of Grown up without a Mom. I was 2 years old at the time.

[@susanlapierre2555]

God Bless Emma love her with everything that you have. I will be praying for you and your family. 🙏❤️

[@bevcamren1316]

Same I will pray every day for your family

[@AxoTheGamer]

@@bevcamren1316💀

[@sonicgalaxy27]

Same here.

[@CamTheMan8]

@@bevcamren1316Yeah cause praying does so much 😒

[@saraswinerton7202]

@@CamTheMan8 there’s nothing much that they can do it. Just let people be nice.

[@aiyannaharris7905]

I really hope they can find a cure for her. She doesn't deserve to leave this world so early. Be strong, Emma!

[@tonyblack4833]

True this world is beautiful and has a lot to offer

[@not_here_for_a_while]

I really hope that if someone finds a cure, they dont go missing a day after

[@ecuador6612]

​@@tonyblack4833not in afghanistan, Iran, venezuela, cuba, Palestine, south sudan, ukraine, haiti, somalia, n. Korea, syria do I continue?

[@tonyblack4833]

@@ecuador6612 sucks to be them

[@LovedLamb]

@@tonyblack4833 at her age I was abused at school. You suffer in this life so you wont take granted Gods gift for us.

[@youmadhuh6375]

I just couldn't stop crying... my heart goes out to them. I can't even begin to imagine what they're going through.. enjoy every second with your little girl... I pray they find a cure🙏🏾

[@CamTheMan8]

lol

[@Niallpro10]

​@@CamTheMan8And what the hell do you find funny 💀

[@MalinoisMadness888]

​@@CamTheMan8how weird can you be to "lol" on a post about a child dying? Do you feel better now??

[@CamTheMan8]

@@MalinoisMadness888 Yes

[@tonyblack4833]

With science research and the right people we can and will cure and deal with any disease

[@HopeLandis267]

Being strong isn't not being afraid it's doing something even when you're absolutely terrified.

[@ComedyPlastic]

Well said.

[@jenniferhuff2566]

This is so heartbreaking. To hear her father’s voice crack when he’s talking about taking her to school just ripped my heart out. I don’t understand why she doesn’t qualify for disability. I know families that had premature babies with health issues and they collect $ from the government every month!!! How is Emma not covered?????

[@AnneAndAnly]

I think it was just because she was diagnosed late it honestly really depends if there district everything but really she should be covered to get all the medical support all of the therapies. She may need like everything should be covered. I don't know how.

[@peachxtaehyung]

Maybe because there's not much known about her disease but with hospital documentation etc she should still be eligible for it...

[@cpiccerilli]

It's potentially because her symptoms/issues aren't bad/severe enough to qualify. Obviously we can see otherwise but with government agencies, she "doesn't need disability" because she doesn't use a feeding tube, breathing tube, IVs, etc. Sure she needs meds and round the clock care, but not beyond what a government agency would deem a parent can provide. It's a shame

[@peachxtaehyung]

@cpiccerilli I don't need any of that though, I am "just" in a wheelchair, need meds and my mom to help take care of what needs to be done but otherwise I don't need any med equipment. I've been on disability since I was 16

[@sharonstevenson1770]

She's a lucky girl to have such lovely caring parents.

[@annlaundrie7884]

🙏🙏😭my heart goes out to this family

[@eltonsherazee601]

No child should have to go through any kind of suffering sad to hear that the " government " will not help

[@AuntJulie-Jacob]

They do if your under a certain income but they, the dad only one working it says, must make too much money for them to be able to help. That's unfortunate for them!

[@erinboateng5961]

I am so sorry to the parents. I know this is a rare disease but I hope Emma gets to live out the remainder of her life with happiness❤️

[@jingerjar1365]

Her father is so well versed it gives me happiness that allows him the ability to speak His feelings and the science understood

[@soccerfanbeliever8725]

I hope she will be ok.❤🙏 No one should go through pain.❤🙏😢

[@MissMarshall]

I cried. I’m crying with you. I want the parents to be as loud as possible & express their hardships for the world to pay attention to Emma ❤

[@adryannamalone9012]

No child deserves this Sending love and prayers 💓🙏🙏

[@BrandonCiCi]

This breaks my heart. Praying for Emma and her amazing parents ❤

[@ThrifterPickerShipper]

What is wrong with government disability???? I know all kinds of kids who get disability for ADHD so why can't a beautiful child living with a fatal disease not get it???? Yeah, that's BEYOND a broken system.

[@lukeohenry9422]

“Just for ADHD.” So you’re saying ADHD isn’t a disability?

[@lukeohenry9422]

I understand you saying this should be a disability. But it’s so rare they haven’t acknowledged it yet.

[@lukeohenry9422]

ADHD is a disability.

[@ThrifterPickerShipper]

@@lukeohenry9422 I said no such thing. Of course it is. I have gotten numerous children disability for ADHD on appeal. The comparison to a short-lived fatal childhood cancer should be expedited and not put under appeal. There is a vast difference. How did I know someone like you would come along with no perspective hahaha. Come on now.

[@ThrifterPickerShipper]

@@lukeohenry9422 Duh. It's the kind of law I practice. Simple to advocate for ADHD but not so much for a fatal cancer? Like I said, the system is broken.

[@kellyong3431]

this is actually sad.

[@Redbeef0]

Boo and hoo

[@fidgetworld4085]

@@Redbeef0 Just rude

[@AxoTheGamer]

@@fidgetworld4085 is ti tho

[@MysteryGoalie]

@@Redbeef0stfu but fax

[@coffeepotguy3356]

no

[@juanakravitz3024]

Very sorry for what this family goes through. But sadly I don’t think they’ll be a cure for Emma in time. But for future generations they may one day have a cure. She’s a fighter that’s what’s important. Living the best life she can!

[@cloroxbleach8661]

Having enzyme replacement is the ONLY cure. It’s a defect in the genome sequence. You can’t change THAT.

[@yogiyogesh-vh2zx]

Prayers for little Emma and her parents May Divine Grace and Blessings be with this beautiful family. ♥️♥️♥️

[@soramame7528]

I am so sorry about her diagnosis. What a beautiful child❤I bet she’s an amazing person.

[@BlackInsanity00]

What a nightmare

[@brittneyakabeezus260]

I can tell you the WORST DAY OF MY LIFE WAS FINDING OUT..there was/is a spot on my brain after having a seizure. My parents were in MINNESOTA with my aunts. My husband had to walk out as I was crying, my parents were crying as well as my grandma. I will NEVER FORGET MY DAD SAYING DO NOT LET ANYONE DO ANYTHING until they get home. My sisters beat me to the hospital as they were transferring me to a different hospital for ICU support. I wish nothing except for happiness & time for this little girl. Thank you for the likes, I just want this baby to have a wonderful life while she has the opportunity, the chance as well as the time. This is the ONE time a person can say their time is valuable.

[@beatrijsvannuffel1922]

?

[@brittneyakabeezus260]

@@beatrijsvannuffel1922 Did you have a question??

[@josephbennett3482]

She's a very beautiful girl, it's really sad 🥺😭

[@micheleromola7266]

This story is unimaginable. My heart aches for this family. I pray for a miracle for them.

[@me-pb3gi]

Oh my!! Sending prayers to all of you!! Stay strong!! Emma is beautiful!

[@violetoderwald6535]

Praying for Emma and sending the Austins a load of love. 💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕💕

[@janel5323]

emma looks like such a beautiful soul, i hope this family can overcome this i keep you in my prayers

[@charrielyn1231]

WOW. How terribly frightening & devastating. Keep making your wonderful memories - your precious little girl is beautiful.

[@kennyphun1946]

Don’t give up hope, believe in miracles. Everyone please pray for this little angel.

[@rosah.901]

Praying for beautiful Emma and her family

[@helianabanes4875]

I saw this loss of everything happen to my completely healthy father, over a period of less than 3 months. That was horrifying, and as his main caretaker, I went through immense trauma, and sorrow. He passed away(he had cancerous tumors in his brain, and cancer in his spinal fluid) and I am still struggling yo understand what, and how this could happen to me, to my father, my family. I don't know if I could survive my child losing everything, and then their life. I wish I could hold this mother, and father, and give them strength, but the strength has to feel pointless at times. There is no fixing it. This is so, so, so heartbreaking. I cannot imagine how surreal this all feels for them.

[@aracelymeza340]

Y’all have my condolences 💐. That’s very sad honesty. Breaks my heart a little girl can’t even live life.

[@star_productionss]

This is actually sad…. 😞

[@jilliantavares8249]

I send my love and prayers to Emma and her family.

[@reedb9039]

This is heart wrenching

[@gigi..rachel]

i pray this little girl and her family will have a wonderful time with her and make so many memories while she is still here. hoping this family stays strong and emma lives as long as she possibly can💕

[@jenniferwilliams9548]

She is absolutely adorable, so precious, sending prayers and big hugs . 🙏💜💙🙏

[@tokemeout]

Ok mom give your self some credit…you’re stronger than you know..Emma’s in my prayers

[@AmberHoyle]

She absolutely is! That's why he has a smirk on his face when she says that.

[@amandahaskin7230]

So heartbreaking such a beautiful little girl i can’t imagine what Emma is going through it must be heartbreaking for her parents

[@Srider85]

😢 it's very painful I hope she get well soon.. good bless..

[@Borderlinegoldenretriever]

Didn’t you listen, there is no getting well with this disease. She is going to die 😢

[@lisboro9489]

@@Borderlinegoldenretrieveru know that tomorrow there might be a cure.

[@ecuador6612]

​@@lisboro9489it isn't 😂

[@Seek1878]

@@lisboro9489 You don't develop cures overnight lol

[@Fire.dragon45]

@@ecuador6612 sometimes it can just happen there’s still a way

[@mikerules666]

My thoughts and prayers go out to Kirstie and Eric and your daughter. May God smile upon you and bless you. 🙏♥

[@carolynrobinson6110]

Prayers for this beautiful family ❤

[@AxoTheGamer]

Y

[@saraswinerton7202]

@@AxoTheGamerwhat

[@MalinoisMadness888]

​@@AxoTheGameris this what you do with your time? Go volunteer or something

[@AxoTheGamer]

@@MalinoisMadness888 I clean up the environment I donate to animal shelters And I care for bugs and nature More then what most of y’all would do lol

[@floreiii]

this is so sad. God bless Emma and her family. the saddest part is she looks like a happy little girl, she looks like she doesn’t know what going on.

[@lockjaw7437]

This is so sad

[@simonegacia4429]

I used to babysit a little girl that had this around 1980. Her name was Erin Faber. I’ll never forget her….

[@roxananunez2735]

I’m so sorry for what’s happening to your precious baby 😪😪😪we will keep her in our prayers

[@tonyblack4833]

That won't do anything

[@roxananunez2735]

@@tonyblack4833to you probably not

[@ChunkychunHealy]

@@tonyblack4833 you’re such a bot! 🤖

[@tonyblack4833]

@@ChunkychunHealy looks who's talking 🤣🤣🤣🤣

[@Ihavestarrz5]

​@@tonyblack4833 bro is so bored he has to respond negatively to a positive comment

[@anthonynoneyabusiness420]

This breaks my heart for that family /: especially as a father myself I’d be broken

[@ImOnGearSoWhat]

So sad, she’s so pure. God please save this Angel 🙏😭

[@tsniyah]

Poor baby I’m so sorry that this is happening god bless emma❤

[@catsnpeacocks]

This is so sad. She’s beautiful little girl and the little boy is so cute.

[@CarmonCarr-e8z]

I love how you support your daughter and I will be praying for her and her illness I hope she lives and knows that she is not alone and many people support her I will be following her journey I will pay for her god bless you❤❤❤❤

[@josiedickson6959]

Mummy and Daddy ..i send loving hugs and prayers from New Zealand

[@FatimaFa-y1b]

I’m sorry for their daughter’s loss, rest in peace Emma you’ll never be forgotten❤

[@JourneyInTheCity]

I knew looking at her, it was battens. I thought possibly sanfillipo but she didn’t have the look. Oh sweet baby. My sweet friend had a daughter named Alice. She passed at 8 with Battens. I miss her every single day.

[@antbbx3417]

Gosh I’m so sorry. I’m legit crying

[@ameliafroehlich2577]

What a horrible and sad situation. I wish I had some magical words to cure this beautiful girl and all kids.

[@AleisaEtheridge]

No matter how crappy your day is ,maybe you didnt get that promotion you wanted ,that date you wanted ,a dress or phone you deeamed of having ,so many things We take for granted ,nothing is worse than a very sick child that you cant help ,no matter how much you love them and you cant save therm and worse ,you cant save them because of money ,I hope and pray this family and every family with a sick child gets all the help they need .

[@AngelMemePlayz]

I agree! ❤❤❤

[@katyr6580]

She is lovely. I wish I could be there to help. Bless you all.

[@lukodaian]

God bless you as you go through this trying moment , sorry about the suicidal ideation

[@BonnieKetterman-qw8vd]

Praying for little emma praying fof both of u as well during this difficult time

[@leeauslander8305]

I lost my daughter in 2022. The grief and sadness never gets better! Good luck to you!

[@lotusthefoodie]

May God bless this family. Stay strong. It must feel so horrible to have your child diagnosed with a fatal disease. She is a beautiful child and did not deserve this. God bless. Amen.

[@59Schnauzermom]

I am so so sorry for you all, prayers for your family

[@genese80]

She's gorgeous I'm praying for her 🙏 and her parents

[@RealestGuppy]

I’m so sorry, I just really hope they can all make good memories and that she doesn’t suffer too much…

[@c.t.1413]

This is heartbreaking❤ keep those memories of her while you still can

[@yumark5800]

This is why as a nurse, I want to focus neurology. So many tragic diseases like these :( I hope there is a cure soon!

[@sandraphillipps4750]

God bless Emma. She is so sweet. Keep strong.

[@EatYourCookies_]

It’s very sad and I wish it didn’t have to happen but on the other hand at least you’re getting a fair warning unlike some other parents that just have their children ripped from their lives in an instant❤❤❤

[@carolynkeelin4761]

I hope she has the best life regardless of how long it is.

[@MJ_247]

It’s not even 7am for me and I’m sad first thing in the morning 😢 poor girl

[@temsuaier7036]

Same here😔

[@brangibbs2218]

Prayers and LOVE for this family. 🙏 😇🤍💙

[@celestephelps5897]

My heart goes out for the three of you. All I can do is pray for you.

[@tuli0hwut78]

Emma, don’t give up hope😢

[@aishatomlinson3364]

I’m 22 years old with C.P. and still don’t get help

[@justinflack5764]

Praying 🙏 right now for your daughter

[@AxoTheGamer]

Y

[@theresahaines2647]

@@AxoTheGamerYou need to seek Jesus!

[@AxoTheGamer]

@@theresahaines2647 y

[@tonyblack4833]

That won't do anything she needs medicine and to be studied to find treatment and a cure prayer never does any

[@AxoTheGamer]

@@tonyblack4833 ikr

[@FDR-ww6xz]

Hope she gets well soon.

[@jenniferjohnson9733]

Prayers to your family. ❤️❤️🙏🏻🙏🏻

[@TehGarfieldSpartan]

I'm so sad for this girl.

[@mariaferreras4369]

Deepest sympathy. ❤️

[@jeffblaginess812]

This shows how precious life is. She got to experience a little bit of life without having her innocence violated by today's society. Life is precious no matter what. I love the smile on that little girl. I feel like crying with the parents because she may be their child but when you see a little girl like that you just want the best for her and want to treat her like my own. May the Lord bless that child.

[@barbaraunderwood1762]

So sad to have to live with knowing your child is going to die. She’s such a beautiful baby girl. I’ve lost an infant, a stepson & my youngest son. When my infant daughter died in 1971, u couldn’t sleep nor cry. The pills that my doctor prescribed me to sleep didn’t help. Really hope she lives longer & yes take plenty of pictures & videos.

[@abdullahak2204]

A very resilient family!

[@angelasampson3973]

Praying for your beautiful baby girl.

[@ToEKnee213]

My very beautiful friend just lost her son to Battens. Prayers to you and the family

[@ginajones8536]

😢my heart goes out to you.she is beautiful. I don't understand why the government won't help.makes me so angry.yet the help.other people from other countries.

[@chriskarpinski7874]

Poor Emma poor little girl, I hope she gets better I wish her and her family the best I will be praying for people like her God bless her and her family ☦️✝️🙏

[@luckycharms1249]

Praying 🙏 for Emma and her family ❤🙏

[@AxoTheGamer]

…

[@Emily_evermore]

@@AxoTheGamerwhat?

[@AxoTheGamer]

@@Emily_evermore what’s praying gonna do

[@sharonsikich5647]

That's so heartbreaking!

[@Leela1210]

My mama heart breaks for this sweet girl🩷 going to hug my son tighter 🩵🩵

[@Everleigh.10]

This is really sad😢 I pray for little Emma🙏💗

[@monikajones6062]

I can relate to that feeling of isolation due to my own experience in 2002 of a somewhat rare infection called nocardia infection that caused an abscess on my brain & quadriplegia 😢 I'm keeping you all in my prayers 🙏 Emma is completely inspiring to me 💖🙌💪🥰🫶

[@Dante2913]

We have to pray for this little baby and her family 🙏🏾🙏🏾🙏🏾

[@hayleymhowson]

I hate things like this it breaks my heart in a million pieces I hope she lives a long and healthy safe life Wonday get married the future and more we love you emma❤

[@thureinminhtet24]

Please survive princess! ❤️🙏