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

[@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 💕 💗

[@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.

[@Serendipity11118]

Thank you!! I was wondering if she had one. Will be donating and keeping them all in our prayers as well. God bless you guys🙏♥️

[@jodigardner1543]

​​@granmommy11 May thy Lord & Lady wrap your family in love and light always & forever 🙏💖 in Jesus name 🙌

[@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

[@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

[@Harper63793]

I watched it too!

[@yvonnerahui8729]

Thank you for that..I hope the parents see your comment..every encouragement is needed. I'm going to look for the book.

[@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💛

[@Quitting134]

This is so sad! My family friend was diagnosed with battens disease 2 years ago and he is 6 currently, but the doctors said that he will likely within a few years. He can’t walk by himself, He can’t eat by himself, This is just such a horrible situation to be in.

[@ssneakyandfriends1626]

couldn't one try using stem cells of a 'healthy' individual or, and hear me out, we risk making a epi/pandemic and make a special virus (due to their ability to inject cells with their dna) to slap the gene in into their brain?

[@ChunkychunHealy]

@@ssneakyandfriends1626 there’s no treatment! There’s nothing we can do except pray for her!

[@julesoxana]

Im so sorry💔 Praying for a cure asap and that he is healthy, safe and well✝️🙏❤️

[@Quitting134]

@@julesoxana thank you! 🙏

[@JustAreecebradenfan]

STOP the cap bud

[@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.

[@HopeLandis267]

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

[@ComedyPlastic]

Well said.

[@ShogoMakishimaxx]

Or doing something when you have no other choice

[@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.

[@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

[@jingerjar1365]

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

[@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 ❤

[@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

[@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.

[@annlaundrie7884]

🙏🙏😭my heart goes out to this family

[@BrandonCiCi]

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

[@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!

[@ileac7122]

Emma’s parents need to speak with a social worker @ the Hosp & ask for that person to intercede for them about getting Disability to make their lives a lil bit easier. Go also to Welfare & plead the case. Don’t give up. They have to provide . They collect our taxes on everything put that $ toward helping ppl who really need the help.

[@adryannamalone9012]

No child deserves this Sending love and prayers 💓🙏🙏

[@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❤️

[@micheleromola7266]

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

[@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.

[@soramame7528]

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

[@me-pb3gi]

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

[@charrielyn1231]

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

[@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??

[@AlyssaWhite-b1l]

@@brittneyakabeezus260why so aggressive lol😂

[@francestaylor1649]

I’m disabled and do understand how it can be heartbreaking 💔🥀I’m Praying for Emma to be able to live life functioning properly 🌹❤️ healing ❤️‍🩹her with all my heart pouring out tears please let’s her live longer lord. 😭🥰😍🤗🙏🏾

[@yogiyogesh-vh2zx]

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

[@soccerfanbeliever8725]

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

[@janel5323]

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

[@kellyong3431]

this is actually sad.

[@Redbeef0]

Boo and hoo

[@fidgetworld4085]

@@Redbeef0 Just rude

[@AxoTheGamer]

@@fidgetworld4085 is ti tho

[@MysteryGoalie]

@@Redbeef0stfu but fax

[@coffeepotguy3356]

no

[@violetoderwald6535]

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

[@sharonstevenson1770]

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

[@aracelymeza340]

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

[@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.

[@jilliantavares8249]

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

[@rosah.901]

Praying for beautiful Emma and her family

[@BlackInsanity00]

What a nightmare

[@jenniferwilliams9548]

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

[@josephbennett3482]

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

[@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❤❤❤❤

[@reedb9039]

This is heart wrenching

[@kennyphun1946]

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

[@amandahaskin7230]

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

[@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

[@mikerules666]

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

[@josiedickson6959]

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

[@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

[@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.

[@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.

[@DominusTecum0917]

🙏♥️🙏

[@FatimaFa-y1b]

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

[@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.

[@brangibbs2218]

Prayers and LOVE for this family. 🙏 😇🤍💙

[@59Schnauzermom]

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

[@DA.BRATT.ziyah12]

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

[@mariaferreras4369]

Deepest sympathy. ❤️

[@genese80]

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

[@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! ❤❤❤

[@lindaseiffert2737]

That beautiful beautiful little girl....how awesome to have her in your life!!!.....while this is the hardest thing you ever experience...she is here NOW....we just never know...if we will be here...our loved ones..our pets...I wish I was there to help...because you BOTH need to live also.....I feel an intense live for your family... prayers and as much happiness as you can muster....and have fun with little Samual too❤❤❤❤

[@antbbx3417]

Gosh I’m so sorry. I’m legit crying

[@lukodaian]

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

[@ImOnGearSoWhat]

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

[@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.

[@jenniferjohnson9733]

Prayers to your family. ❤️❤️🙏🏻🙏🏻

[@katyr6580]

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

[@simonegacia4429]

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

[@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.

[@sandraphillipps4750]

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

[@c.t.1413]

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

[@star_productionss]

This is actually sad…. 😞

[@BonnieKetterman-qw8vd]

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

[@catsnpeacocks]

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

[@ameliafroehlich2577]

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

[@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

[@brea-amor277]

Sending the best & Love to Emma & Family

[@anthonynoneyabusiness420]

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

[@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.

[@lockjaw7437]

This is so sad

[@celestephelps5897]

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

[@RealestGuppy]

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

[@SpookyElle]

Hearing the mom asking god just to take her daugther and bring her to heaven, broke my heart 💔 Thats just proves how much pain it was.

[@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!

[@redxoluhvie]

Some parents with children with severe autism (level 3) say that their life is ruined because of it, they say that their childrens life is ruined because of it, they think oh why does my child have to be this severy disabled? But they should of been happy severe autism isnt the worst, its not fatal... theses some parents who WISH their children atleast had seveere autism instead because with autism level 3 the child can learn to talk and stuff but sadly its not like this for every child.. God bless thid child i hope she gets better ❤ :(

[@kellybultman3588]

Someone I know, one of her sons passed away from this disease. 😢

[@angelasampson3973]

Praying for your beautiful baby girl.

[@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

[@elainecartwright1793]

Oh dear god I pray for your family I’m 66 yrs of age why must children suffer I would give my life to save this beautiful child. I’m old it’s just not fair ❤❤❤❤❤❤❤❤❤❤❤❤

[@carolynkeelin4761]

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

[@kimbrooks7639]

this child will do the best she can. I wish her parents much prayers, and hope for the best.

[@ToEKnee213]

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

[@luckycharms1249]

Praying 🙏 for Emma and her family ❤🙏

[@AxoTheGamer]

…

[@ThEcHiLlGuYEm]

@@AxoTheGamerwhat?

[@AxoTheGamer]

@@ThEcHiLlGuYEm what’s praying gonna do

[@no_nose_diving_danny2143]

My prayers go out to the girl and her family

[@abdullahak2204]

A very resilient family!

[@canadiancitizensfirst7992]

Wow. Poor child and family. I wish you all the best. 😊

[@tuli0hwut78]

Emma, don’t give up hope😢

[@pixiewizard]

I’m so sorry for this little girl, I pray a miracle will happen.

[@aishatomlinson3364]

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

[@crbcarefree4101]

Omg life is so cruel, so unfair. I'm just heartbroken over your daughter. I hope many happy memories for the 3 of you❤

[@PorshiaVonne]

God bless Us All 🙏🏾 Emma is such a beautiful child 💜

[@delightful.horse.87]

God bless us all including Palestine 🙏

[@AFVfan1]

@@delightful.horse.87What does this video have to do with Palestine?

[@brey1720]

My niece has had seizures, diagnosed with epilepsy 🥺 shes on medication to prevent them and has done very well. Been able to lead a normal life. But this is still a terrifying thought. And their daughter has such a bright beautiful smile, i hope she beats the odds, i really really do!