A Kid with a Terminal Disease and the Parents Who Will Love Her Forever (Batten Disease)

[@SpecialBooksbySpecialKids]

Ellery’s diagnosis, Batten disease, does not receive a lot of attention. Since it is rare it is not “profitable” to fund research. Because of this, research is heavily reliant on public contributions. Learn how to help cure Batten disease at www.curebatten.org/donate/

[@avainspired]

It's so upsetting that certain diseases can't fund research because it's not profitable. I hope one day everything can be researched so everyone has a chance to find cures

[@guineveremoonmist1060]

Thanks for the info!❤❤❤

[@elisabeth278]

So does Ellery know that she can’t do these things anymore?

[@ghostplays7299]

Hold up why does Batten disease sound a lot like sandphelepo syndrome?

[@DudeWhoSaysDeez]

@@avainspired That is where government should step in and fund the research through performance-based grants

[@bbhdd6181]

“We’re gonna have our whole lives to grieve, let’s not grieve now”. That was very profound and I’m gonna be thinking about that for a long time.

[@Bl-mb3oh]

Same…. My daughter has Batten.

[@MISNM0]

Not trying to endorse a Christian Bible story and still there are similarities to this and King David weeping for his firstborn. Not to go into it but there is a lot of poetry in that passage. Not talking to his morality or anything but the sentiment only. Grief transcends.

[@bbhdd6181]

@@Bl-mb3oh I’m really sorry. I hope you can live in the present. Wishing you and your family a wonderful Christmas x

[@SueP-D]

It’s a very strong sentiment

[@joserubio9615]

@@Bl-mb3ohGod Bless you all! Have a merry Christmas I pray your Daughter and your family have a blessed year

[@travelbird4644]

My daughter had Batten disease. It's soul crushing. I miss her terribly. It's good to see attention being brought to it so a cure can be found.

[@Kaboomnz]

That's heartbreaking

[@kathyjohnson2043]

I'm so sorry for your loss.

[@globalwarmhugs7741]

I cannot imagine your pain. Sending love. ❤

[@vp0617]

What was her name?

[@TheDenizxo]

Omg I am so sorry for your loss of ur beautiful angel. I hope in the next life u will meet again one day 💗

[@katiekawaii]

Btw, to all loving parents: if a doctor ever tells you your child is doing something "for attention," please get a second opinion. Children rarely do things "just for attention," and when they do, it's a sign of a deeper issue, so the next question should be "why?"

[@lorenagagamonster]

Plus, if they do it just "for attention", it's a sure sign that you should give them attention. Children need care, that's just normal.

[@14isoldenough]

What? Kids do stuff just for attention all the time

[@sweetgirl070707]

@@14isoldenough The context given in the comment is that the behavior is concerning enough to make the parent seek medical attention, so we presumably aren't talking about typical children's behavior.

[@globalwarmhugs7741]

Precisely.

[@PomegranatePomPom]

Yes, if a child really do something "for attention". It's that there's a deeper psychological issue etc. It's not something irrelevant.

[@DoNotLoseTheMoon]

She was diagnosed in March 2020 - I can only imagine having to deal with this on top of everything we collectively went through in 2020. Sending so much love to this family.

[@jeneinstein]

She was formally diagnosed in November of 2020. It took us 8 months to get a proper diagnosis. It was awful to get such horrid news AND be without family and friends. -Ellery's Mom

[@craigward7691]

@@jeneinstein your strength, courage, openness and overall depth of character are astounding. You will no doubt make every moment of her life special and filled with happiness. God bless both you and your husband and of course, your beautiful daughter.

[@d.j.bauhaus1831]

@@jeneinstein sending love, y’all are so strong

[@LadyTidePod]

I thought this as well!

[@myheartwillstopinjoy8142]

@@jeneinstein Hey, Jen. I just wanna tell you're such an exemplary mother. I really admire you. You're doing so much and you're showing so much strength in those difficult times. I really wish you and your family the best 💖

[@evonnewhalen9794]

I love Ellery’s name. Not only is her name unique it’s beautiful as well ❤. She is absolutely beautiful 😍

[@CarolineMosesComedy]

This is why I want to become a genetic engineer. I'm a senior in high school and in freshman year, I took biology and also read up on these sorts of terrible diseases. Batten disease was the one that really made me go, "I want to help find a cure for this."

[@jeneinstein]

Thank you so much for having this desire. It could be life changing to families like mine. -Ellery's Mom

[@Girlygirlygirl2920]

​@@jeneinsteinim really sorry about what happened to your kid you guys are strong ❤

[@FloridaManFrank]

Don't lose that drive!

[@aztreonamizu]

I’m glad this video gave you motivation :))

[@sebastianblackandwhitewatc2722]

The best of lucks man, I hope your dream to come true, never give up!

[@8lovelynites]

I think I speak for thousands who have watched this video - I will never forget Ellery.

[@jeneinstein]

Thank you so much.- Ellery's Mom

[@crystalbaugh5105]

She is so sweet, a true earth Angel💜😇💜 We love YOU Ellery, keep fighting!

[@karikari7336]

My daughter who is 6 saw this with me a week ago. Today it popped up again and she says oh mom is that Ellery?

[@jeneinstein]

@@karikari7336 what a sweet girl you have.

[@resilientbeyondwords]

Absolutely agree with you. Thank you for saying such. It's true, she is a remarkably unforgettable little girl.

[@MossyMozart]

I am so struck by what Daddy-Ellery said, "We're going to have the rest of our lives to grieve, so let's not grieve now. 'Cause it's not doing us any service and it's not doing Ellery any service. We need to be here for Ellery." That philosophy is very profound. I am so glad that he is Ellery's daddy and Jen's husband.

[@emmavaughn5865]

What an incredibly strong, articulate, caring mother. My heart is with all of them.

[@jeneinstein]

Thank you so much.- Ellery's Mom

[@EwaU1974]

@@jeneinstein ❤ ❤ ❤

[@jimjonestown4940]

Jesus Christ powerful Holy and Saviour Bless you forever friend amen

[@22lyric]

And incredibly strong (and loving) father. Wish I could hug all three of them. Praying God makes everything easier for them. ❤️🙏

[@bileigh8675]

- AMAZING DAD too -

[@sweetgirl070707]

I didn't know this child existed 10 minutes ago, but I swear I genuinely love her so much.

[@OversizedSausage]

The innocent should always receive love

[@dnagoddesshealings2212]

Me too, I feel this sooooo much! 🥺🙏🏼💗

[@angmoulton8528]

I know right 🥺❤️

[@rae7864]

Right?? Me too. I'm a mom and I just...love her. I want her to be okay.

[@AmyBumble]

Same. I feel her mother and her emotions in my bones. My heat is with this family.

[@emmy144]

This family is the sweetest. I've worked with children with Batten disease in the past and it's a cruel disease that no child/family should ever go through.

[@aronlelenora9572]

❤❤❤❤

[@FlickeringEmber]

I'd honestly never heard of the condition before so it was really interesting to learn about. I can't imagine how painful it is for the families to watch their child go through it though.

[@sarazink2237]

I also have never heard of this and couldn’t image the heart break they go thru 💔

[@oriaaspenalexander]

Despite being completely tone deaf, Chris loves to sing to these kids because they love to hear it, and I just love that.

[@FluffyEclairs]

Chris is terrible at singing 😆

[@mosseisleyYT]

Is _that_ his problem? I thought he just had a lousy singing voice.

[@amandaschieber9700]

I’ve never heard someone sing twinkle twinkle little star so badly 😅

[@florawest9333]

I noticed that but didn’t focus on it because Chris is doing so much good for all the children and families that go through such horrible situations with so many diseases that aren’t known or not funded that Chris’s singing abilities or lack thereof isn’t a drop in the bucket as to what all he and his partner are unselfishly doing for the greater good for families!! I love them and what they are doing!! It’s so amazing!! God Bless them in their lives and for all that they are doing 🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️

[@ProveAllThings1Th-5-21]

HaHa, I heard him sing Elvis on another video! He's tone deaf for sure but his singing is still so precious. I love it too.❤

[@aprylrittenhouse4562]

When my son passed I thought I'm not a mom anymore, till my grief group said just what her mom said.youll always be Kaleb mom, nothing can take that away. You and your daughter are in my prayers

[@emily3]

This broke my heart, you’ll always be a mom who loves her son. 😭❤️

[@Gretaplays]

Sending you so much love. A mom will always be a mom ❤

[@aprylrittenhouse4562]

@Lin M that's right lots of love

[@kellyharrington2949]

I truly believe that you will see Kaleb again! He is not gone! He is in another place, where he knows nothing but love and happiness, and one day you will join him there. You were his Mom before he passed; You are his Mom now; You will be his Mom always. ❤

[@MrsGlynn07]

When my son died I wanted to hold onto the grief because it felt like that was all I had left. But with time you learn that you will always have the memories. And you will forever be your child’s mother.

[@FresnoRays]

You can just feel her pain, distress, and anguish in her voice as she tries to communicate to no avail

[@Mysteriousheadlines]

One of my friends has two daughters with CLN3 Batten disease. I never would have known about it prior to them being diagnosed. It is so devastating. My friend started a non-profit to help raise awareness and money for research. I’m hopeful that a treatment and cure can be found

[@absolutelyridiculous6743]

Two?! Oh, man...my heart goes out to your friend.

[@MISNM0]

Maybe share with a celebrity who is really a humanitarian. I'm thinking Mandy Patinkin. He and Katherine are just the best. They're good at shining light on things that need it. Much love to your friend and her precious babies. I know they all know how precious everything is and really love each day because of it. May they ask be filled with peace.

[@lovingmayberry307]

Could you tell us the name of the non-profit?

[@a-girl-and-her-cat]

@@MISNM0 you are so sweet, but OP's friend with the 2 daughters has the non-profit ♡ Ps; I also loved him as Gideon :)

[@MISNM0]

@@a-girl-and-her-cat Awww haha.... was wondering if I messed up. Damn. I'm ask likelihood though people will support for great he is and someone new will check it out and see the coolest people going these days. They're honestly really comforting.

[@therecklessmoonchild260]

I love how Ellery is always correcting her dad saying “ and George” 🥰 such a sweet personality

[@stepht7508]

I wish I could thank Ellery's dad for his comment about not grieving now...My better half was diagnosed almost 2 yrs ago with early onset Dementia and I just realized that that's what I've been doing. I'm praying for Ellery and her family. Such strong parents💖

[@zack_einstein]

I'm sorry to hear about what you and your partner are going through. I'm glad my words could help you.

[@BlissBee]

We're lucky to live in a world where dementia research is finally paying off I wish the best for you and your partner and hope that the advances in medicine can help slow it down

[@kloee7254]

her brain may forget but her soul will not. and it will search for you again

[@natashacartwright7941]

I’ve watched this channel for some time, today when I saw Ellery’s sweet face I stopped what I was doing to share this video with my children. Last year my son was in Ellery’s kindergarten class. Thank you so much for educating us. We’re so thankful to get to know Ellery a little better and to understand her disease and get to know your family through this video. All our love XO

[@TheKatarinaGiselle]

Thanks for sharing that. How did he recieve the video?

[@jeneinstein]

Thank you so much for watching! Ellery adores the kids at school and I think you and I went to LCCC around the same time. -Ellery's Mom

[@lenacheney]

@@jeneinstein your daughter is such a beautiful little girl

[@jeneinstein]

@@lenacheney thank you so much. 💓

[@caswanden454]

@@jeneinstein I used to be a nanny for a time before the pandemic, and just from this video I can tell that, were Ellery one of my kiddos, she would be my reason for jumping out of bed in the morning. Her laugh is delightful, and her eyes are so expressive - I feel like we could have a whole conversation just by exchanging looks. What a privilege it is to share the world with her.

[@simonegacia4429]

I used to babysit a young girl across the street who had battens 40+ years ago. Her name was Erin Faber. I will NEVER forget her.

[@jessicar3291]

Wishing this sweet girl and her loved ones peace and comfort in the days ahead.

[@jeneinstein]

Thank you so much and thanks for watching. -Ellery's Mom

[@djeemot3753]

@@jeneinstein try to find the word dumb fhiurfiuehftuefueifdumbf4iefvniuiuhveefiuvdfiuhvuieiuhcuirfhvihievuiefijuefiuguirtniuugtrhiuviurirvthukrtjortglkorfwgl Fertility Gljirtgkugtrngrbbrggrb

[@djeemot3753]

@@jeneinstein try to find words jjjhujuhuhjibkihnijjj huhhuhjuujhhujhyujyhujhyujgbujtbgbjuugbstuffjjjjihhhhijyhjihhikyhuyjhgbjugjjfunnyjjjjnhhhhhhhhhhjjjjhhbhbhbhhhjhhhhhhjimmyjfjfrhhfjufguhtghugtujgtujtjjtgjjggjhgtjjgtuhttujhgujhgujtgjutgjjtweneedpeaceintheworldkgjgijggijggijghjigkiffkideijffkifvkmff Clue there’s 4 words

[@angelicaquirarte]

@@jeneinstein whising your little girl,you and her love ones just the best love from mexico 🇲🇽

[@myishacherry7242]

Oh this breaks my heart! What a precious beautiful little girl....this is so unfair...what a strong smart beautiful mama she has & supportive daddy who has to shoulder so much. Prayers for their family as they navigate life with this terrible disease. I like to believe that although bad things happen, that one day everything will be beautiful & perfect, and loved ones we lost will be reunited with us for eternity in vigor & strength with no more disease sickness or sorrow..🙏🌹

[@dfgdfg_]

What a lovely Dad ❤❤❤

[@jeneinstein]

He's pretty wonderful. -Ellery's Mom

[@asiajo999]

This mum can't stop kissing her daughter, this is pure love. You are wonderful mother, it's so heartbreaking to see your tears. I wish you all the best, your daughter has parents she deserves ❤️

[@jeneinstein]

Thank you so much. -Ellery's Mom

[@alliexcx5576]

@Jen Einstein you are such a great mom!

[@jeneinstein]

@@alliexcx5576 thank you. Ellery is the best part of me.

[@jeneinstein]

@Michael Morbius this not at all an appropriate place for you to insert your religious beliefs. So horrifically inappropriate.

[@DougNoel-f7t]

My extended family lost a sweet, beautiful little "princess" at the age of nine sweet years, and WE are glad we allowed her to live her best life up till the end. NO ONE STEPS INTO THE WATER AND NOT MAKE A RIPPLE. SHE IS IN HEAVEN NOW.

[@Xenonmorph__]

You will ALWAYS be Ellery's mom. Never let anyone tell you otherwise. Ellery deserves nothing but all the love and support in the world. She's lucky to have such a caring family.

[@jeneinstein]

Thank you so much. We are so lucky to have her. -Ellery's Mom

[@mikaelastefkova]

@@jeneinstein I already love her and you as a family, take care 🫂🍀 Sending hugs and love 💗 I'm so proud of you, you are a wonderful mum

[@juliushenry9092]

​@@mikaelastefkovasame

[@kenzielynn1047]

My beautiful little cousin, Bethany had Batten Disease. Her disease onset at 3 and progressed rapidly. She lived well beyond the time given by doctors. She is greatly missed. Praying for your family. God bless you little Ellery.

[@jhayejarvis]

thank you Zach for these extremely helpful words, " we're gonna have the rest of our lives to grieve so let's not grieve now. "

[@kellystanley5892]

Ellery's parents are so inspirational .They gave me a new way to look at things.Amazing family.Ellery is so precious ❤

[@BEE003SXP]

Ellery has such strong parents. It's inspirational how positive they are.

[@jeneinstein]

Thank you so much for your sweet comment. -Ellery's Mom

[@bugsbunnypoo]

@@jeneinstein your such a good mom it actually makes me wanna cry 😭 (not sad)

[@laurenbendik2006]

I am glad her mom realized she will always be her mom…its the truth. I know someone who lost a baby and now has another child; she always says she is the mom of both of them.

[@ms.peregrine]

This poor woman has been through so much. It isn’t fair at all but she seems very strong.

[@jeneinstein]

Thank you so much. ♡ -Ellery's Mom

[@lucanhenrique7457]

She is the most beautiful little angel

[@jeneinstein]

Thank you so much.-Ellery's Mom

[@user-lb9de4ej4q]

This is one of the most beautiful human souls I've ever seen. Looking into her eyes as she speaks about her daughter is somehow so healing. There's just so much pure love on display.

[@jeneinstein]

Thank you so much. I love her with all that I am and so much more than I love myself. ❤️, Ellery's Mom

[@emily3]

@@jeneinstein you are such a beautiful soul, and your daughter is so precious. 😭❤️ you’ll always be her mom. And an incredible mother you are!!

[@jeneinstein]

@@emily3 thank you so much for your kind words. She is the best part of me.

[@emily3]

@@jeneinstein she is such a special little girl. Sending all my love to you and your beautiful family ❤️ thank you for sharing your story in this video!

[@1rage17]

@@jeneinstein Please remember to take care of yourself just as much as you do for your babygirl. It might be hard but you are *just* as important too ❤ god bless you, you’re doing everything right and everything you can as a mother & as a person in general. don’t forget that.

[@KaltrinaDemiri]

You can see the sadness and hurt in the mom's eyes. No one deserves to go through this.

[@jeneinstein]

Thank you. I couldn't agree more for me, my husband and other Batten families. Thanks so much for watching and for your comment. -Ellery's Mom

[@MiguelLopez-bq6wf]

It’s not sadness, It’s just the privilege and emotion of having such a princess ❤

[@MiguelLopez-bq6wf]

Hello Jen and Ellery’s family ❤. I’m glad to have found you here. I have seen you now and I’m very excited to share my thoughts with you and communicate you. I think you have a perfect girl. You just have to watch the video a little to see all the happiness, tenderness and diversion that it transmits even by its presence. I think you are privileged parents of having the girl. It is joy in person. She shows everything she enjoys with you and everyone, and How much she love her parents 🤤🤤🤤. Like I think everything is variable and we must to enjoy everything in our present and in our days. Tomorrow it is another different day and everything is possible. I lost part of my family when I was a teenager and it wasnt expected. Today I know life is gonna give me this happiness with new persons in the future. And for sure Ellery will be giving us her happiness more more years. She is a gift ❤❤❤. I hope you can read it and you can learn it. I think happiness is for people who deserve it. We are that people. Kisses for all 😊😊

[@ChevyGuy70]

This channel continues to open my eyes. I’m in college to become a special education teacher and this channel has played a big part in that decision. I love your content and my heart goes out to the family.

[@radioaktiv7841]

I've met many Special Education teachers, very very nice people. God bless you for caring for these people.

[@shoosh222]

I’m a 5th grade ELA SpEd teacher. I would never do anything else. My students have my heart.

[@terricolarusso2639]

My daughter works with children with profound mentally disabled children. I am so proud of her. I tell her all the time she is helping God’s special people 😢

[@Shelleybelly-vt4tw]

No matter what parts of Ellery that are now missing her beauty, grace, sweetness and loving spirit will never fade. She's a most wonderful daughter!

[@Marchingvenusaur]

Their doctor telling this mom at first that her daughter was doing it for attention is pretty vile. I physically cringed at that.

[@mosseisleyYT]

It's a stock "diagnosis" that all too many doctors come out with when they don't really know what the problem is and don't wish to seem ignorant (doctors are expected to know things, of course). Ellery's mother is lucky that that physical therapist was able to come to some kind of conclusion (a suspicion, really, I suppose) and recommend a neurologist. I remember a sad case, many years ago now, in which a toddler kept crying and shrieking for no apparent reason and so of course, his parents took him to hospital. The doctors came out with this stock "diagnosis" - "He's just doing it for attention" - and, over the child's parents' protests, refused to do anything further. The boy died soon afterwards, and only then was the actual problem discovered: he had swallowed an open safety pin, and it had been piercing a hole in his esophagus. It eventually worked its way through and pierced his heart. I don't remember what consequences there were for the doctors involved in that case. *_NEVER_* accept a doctor's assurance that a child "is just doing it for attention" - *_EVER._*

[@Skyebright1]

Yeah it was good that the physical therapist realised it was a neurological issue

[@kingcrimson234]

They weren't a specialist, and this is a very very rare disease. I don't blame the doctor.

[@kittenparty4356]

@@kingcrimson234 I mean...you really /should/ blame the doctor. Women and children are often treated poorly by Dr's (both male and female). I went to the doctor for really bad pain in my sides. I have mental health issues, and was told it was anxiety but they did an ultrasound and said nothing was wrong. 6 months later I moved and got a new Dr. As soon as I mentioned this same recurring pain, she sent me directly to an image lab and took it very seriously. They called me hours later and told me to go to the ER. Yeah, it was a VERY large kidney stone. The ER Dr had a fit when I told him that I had been looked at 6 months before. This stone was so big that even 6 months prior it would have been virtually impossible to miss; unless you were intentionally not really looking. So back to the main point; yeah, the Dr wasn't a specialist. But that's the entire point of having a PCP. They are supposed to send you to a specialist when they themselves can't solve it. You don't go to your PCP to get cancer treatments. You go to get minor treatments (colds, shots, possibly a few stiches) and referrals for anything that isn't basic medical problems. This child's Dr was completely irresponsible and probably embarrassed that they didn't have an answer, literally putting their ego before a child's health. The Dr is literally the ONLY person at fault.

[@JDog2656]

People make that assumption all the time. With only a small percentage of the time it will be true

[@mewkiuu]

Every time I hear of doctors who tell their patients- especially children- that they’re doing something for “attention” or just brush off a patient/parents concerns, I get so upset. I’ve had that experience. My loved ones and friends have had that experience. And I’m sure many, many others out there have had that experience as well. I won’t pretend to understand the stress that comes with being a practitioner in the medical field- and I greatly respect all of those out there who have dedicated their lives to helping others- but it’s just… so common for patients to not be taken seriously. At the very least, the symptoms are REALLY impacting them. They’re REALLY experiencing something that is challenging day to day life. Even just having a doctor acknowledge that is better than being told things like “it’s just in your head”, “you’ll grow out of it”, “you just need to tough it out” (real experiences). My heart goes out to this family. I can’t express through words how much I wish them peace and happiness ♥️

[@sherryd.3425]

Love to you and yours for your Great Big Heart!

[@mercedes523]

My child has a debilitating disease and I find myself getting angry at other parents who take their children’s good health for granted. I know I shouldn’t do this but it’s so very hard not to. I want them to KNOW how blessed they are. It’s tough.

[@shannon9218]

This video gave me some perspective for sure. I was crying earlier because of my own childs issues, but she is physically healthy and has the ability to continue to progress, albeit slower than other kids. This situation and your situation is so much more difficult.

[@treeyellow4627]

100%. Don't take anything for granted.

[@dolson9366]

I have two beautiful daughters with no issues and I've always felt so lucky and grateful for it, every day. I find myself getting angry with parents who take their children for granted.

[@ElysetheEevee]

I can see how you'd feel that way and to me anyway, it's a natural feeling. You shouldn't feel ashamed for that as long as you're not actively taking it out on anyone. We all want the best of what we can get, including for those closest to us to be healthy and happy. Life can be really unfair.... Ever since I had my boy, well actually before that, I keep getting this nagging anxiety that something huge and negative will happen with him when he's younger (within the first 7-10 years of his life). I try not to let this overtake me in any way, obviously since it's probably just worry and I don't want to induce any kind of manifestation if that's real, but it does make me really appreciate the time I spend with him everyday. I have health issues and some other things, so I can do things with him like normal parents. I wish there was some way for me to send out vibes or something to help out. I'm only 33 but feel my life is mostly over, so I'd happily give the rest to kids who could use it. I wish bad things didn't have to happen to kids....

[@sometimesnevernot]

Many need to lose something to appreciate it. I'd hope they don't, of course. But for so many, gratitude doesn't come easy.

[@laurenferrell6013]

Oh my heart!!!!! To hear her PRECIOUS voice say “icky house” (Mickey clubhouse) just melts my heart!!!!

[@everydaynicole1]

I had never heard of Battens Disease until a friend from school told me their son was diagnosed with Infantile Battens Disease. Their son and my son were the same age and played together when they were younger. He passed away last summer. It was heartbreaking. I’m so sorry Ellery and her family are going through this. Chris you are always so kind. Loved when you sang to her.

[@THEHORSELOVER235]

How old were they when they were diagnosed? How many years did he live with it?

[@Noelliuss]

This mother is one of the sweetest persons I've ever seen ❤️ all my love to this family

[@zack_einstein]

I agree! 😉

[@rosemuchina4986]

She's such a Sweetie Girl Adorable We Serve a. good n a Faithful God of a Second Time I Pray that he may Interve for condition in His Divine Supernatural way in the Mighty Name of Jesus Christ of Nazareth shalom Love n Hugs Shalom

[@franco_d24]

i can't imagine living and knowing that you have a terminal disease, this videos help me see how blessed I am, I'm so grateful for everything I have, this videos are just the best on KZbin

[@jeneinstein]

Thankfully Ellery is not aware of the terminal nature of her disease both because she is so young and because her disability prohibits her from understanding this type of thing. -Ellery's Mom

[@icy8403]

@@jeneinsteinis this disease similar to what sanfilippo syndrome does?

[@jeneinstein]

@Icy it is similar, though I believe that children with San Fillipo tend to have a somewhat longer lifespan.

[@icy8403]

@@jeneinstein ah alright, thank you. Wishing you all the best ❤️

[@ezzyalvarez7206]

This comment was unnecessary....

[@ashleehughes1194]

Oh gosh... "I will ALWAYS be Ellery's mom." 😭💔 Yes you will, and she will always be part of you. I hope that whatever time you have, it is spent well and full of the love you all show each other daily. ❤❤❤ She is sooo loved.

[@jeneinstein]

Thank you so much for your sweet comment and for watching. -Ellery's Mom

[@umbreonespeont6]

Thank you for this wonderful channel and all that you do. As a disabled person, I appreciate you. Ellery seems so sweet!!

[@djeemot3753]

What disability do you have?

[@strisselstudios3932]

@@djeemot3753 thats alittle insensitive dont you think?

[@djeemot3753]

@@strisselstudios3932 I’m literally asking what disability they have how is that insensitive BRUH

[@strisselstudios3932]

@@comprends2138 i was responding to somebody mocking the person aboves comment.

[@djeemot3753]

@@strisselstudios3932 I didn’t mock them

[@lockedherselfout]

Her mother is an inspiration to parents with terminally ill kids. She's living in the moment and being the best parent she can be to her child who's alive right now and that is INSPIRING. So many grieve children who are still alive and she's just decided to embrace every day month year she has left with her beautiful little girl. That is damn powerful!

[@jeneinstein]

Thank you so much for your compliments, for watching an caring. It means a lot. -Ellery's Mom

[@SarahPriceHancock]

What a beautiful child. As someone losing my voice from a neurodegenerative disease, why on earth haven't her therapist provided her with AAC? There are so many picture based speech generating device apps. It's so sad she's frustrated by not being able to express herself. Neurodegenerative Diseases are such terrible terrible situations. My heart goes out to her and her family.

[@jennifereinstein6482]

Hi, Ellery's aunt here. She has used them in the past but what with muscle weakness and other problems, it didn't end up being very successful.

[@ShyAnn291]

@@jennifereinstein6482 can you use one where she uses her head to activate it?

[@jennifereinstein6482]

@@ShyAnn291 I know she used to use one and doesn't anymore. I know that she still goes to her various therapies, so if it were doable, her mom would be totally on it. But thank you for keeping her in your thoughts. Edited because I conflated two different responses.

[@bmcdermott]

AAC devices/systems are wonderful but sadly do not work for all situations. This may be due to muscle weakness (as in Ellery's case) or other factors such as brain damage / loss of communication skills.

[@nicolechamberland995]

That precious little girl has the MOST beautiful eyes! Praying for the entire family. God bless you. Stay strong mommy and daddy. 🤗

[@Tigrette-m1x]

Oui cette petite fille et sa maman ont besoin de prières. Je suis touchée par la Grace de cette enfant...et que quelque chose vient troubler.

[@marilynpeppers1356]

As a mom of a child that went to God when he was three, I can tell this family that in the end, it is the love they give each other and share with each other, that matters. 💜

[@rachelgraham2038]

❤❤❤❤❤

[@DaniBadger777]

I am so sorry for your loss 😞

[@marilynpeppers1356]

@@DaniBadger777 You are kind. Thank you.💜

[@Autumn_Forest_]

I have a 3-year-old boy. I cannot even imagine what you went through losing your little boy at such a young age. Before you have a child, you have no idea how much personality a young child has, how many memories they can pack into a brief amount of time, and how many dreams you’ll have for them. I pray that you have wonderful memories and lots of new reasons to enjoy life amid the grief you’ve experienced (and likely still experience). ❤

[@lenacheney]

"Were going to have the rest of our lives to grieve so let's not grieve now" that is so profound. This episode hit me hard and brought me to tears. My 4 year old is autistic and sometimes I find myself feeling bad he might not have a normal life and that breaks my heart but watching this makes me realize I'm lucky he will have a chance at life unlike poor Ellery.

[@sherryd.3425]

Your son won't have a life like yours or many boys his age. He will truly have a life that is uniquely his...as supported and facilitated by you and others. Please remember that women are born to teach language, social skills, and boundaries. Autism doesn't require different skills just more deliberation and checks for understanding. Autism doesn't require more love because we love our children as much as they need, no matter what, and no matter how old they are. Love to you and yours.

[@kitty.catalyst]

I don't know your sitouation but i will say not to worry too much, and love your son as he is as hard as it might be. i have level 2 asd and im 15, and im pretty happy. i have friends with intellectual disabilities that i met in special ed and i love talking with them. its hard, but we can live very good lives and make friends. and we are capable of love, i know i love my mom very much and im sure your kid loves you.

[@spookyscaryskellytons1327]

My sibling and I, both adults now, have autism as well. So do many of my friends. If given the support we need, we can be just as happy as normal people :) Sure, our lives might be different, but your worth is not defined by what you can produce for society with a degree and a job. If you let go of the expectations you had before his birth and just love and support him for what he IS able to do, he WILL lead a happy and fulfilling life! On a different note, my sibling was diagnosed with low functioning autism, severe behavioural issues, and a mental disability. They went to special ed all their life and were projected to never be able to function without assistance. Then, at like age 14-16, they taught themselves gaming, then English as a second language, then hacking, and after a couple of years of college specially for autistic kids like them, ended up securing a job. They went from barely able to multiply 7x7 to a job in less than a decade. Turns out he was neglected by special ed and severely limited by being put in a class with other kids with severe issues. So I do want to ask that you always watch his abilities, and if you think there is an opportunity to grow, that even professionals can be wrong sometimes. If your instinct says something is up, listen to your gut, and DO seek second opinions! Also, If he can't find kids at school to play with, help him join some hobby clubs, and if that doesn't work, playdates with other autistic kids. It's not like 3 decades ago that a kid is doomed if they can't find friends inside their school, there are many online resources available to give him the social life he needs. But mostly just focus on the first paragraph. Just love and support him where he's at, and he will be fine. You sound very empathic so I'm sure you can do this together

[@sharon012490]

This episode of SBSK absolutely gutted me, Ellery seems like such a sweet little girl with amazing strong, parents. I cried hearing Ellerys mom saying that Ellery would get frustrated when she couldn't walk or communicate. I'll be keeping Ellery and her family in my prayers!

[@JLC_Subutai]

Jesus, and to think I was cursing my luck for losing my job, this changes your perspective completely.

[@valentinacardona173]

I love how sweet, patient and respectful Chris is with all the kids and people he interview . Such a beautiful human being and a beautiful work he does

[@kendra8539]

His work is life changing and can change so many fields from politics to Healthcare. So grateful to have this channel

[@tgrabowski5178]

What a sweet Lil girl. ❤ When she started asking for House and Mickey my heart just swelled up. My heart is with this family and dear sweet Ellery.

[@Rinzler.14]

People like Ellery are the reason research should continue. She is just the sweetest little girl. I will pray that you guys get as much time with Ellery as possible, live in the present smile and be happy your all together.

[@TheDaniela3112]

And to think that her life could be spared if only money wasn't the only thing that powers industries. It's like thinking of all the people who died victim of illnesses for which we have the cure today - just wish we could go back in time for those people and go to the future for Ellery

[@M8kmecry]

I dont know if it is ok to say this but im going to and hope it isnt taken as offensive. This family, and this momma, have so much love to give. So much life wisdom. I know they struggle with a lot already, and one never gets over losing their child. But one day, if they become ready to once again share this beautiful love with another child, I hope that they do, in some way. Maybe fostering or adoptionof some kind. They just have so much love and my heart ACHES for this momma. Im crying here watching this. She wont ever NOT be ellerys mommy, but maybe one day another little soul will get to share her love

[@jeneinstein]

Thank you for this beautiful comment. Another child is something we are considering. Thanks again for being so sweet. - Ellery's Mom

[@elishh8173]

I cant watch this I WILL cry. The girl in the thumbnail looks like a little angel with eyes that are wise beyond her years. Just want to send her and her family love and prayers. And love to everyone who reads this too ♡♡♡

[@Anunkindnessofravans]

This was a tough one to watch

[@mahna_mahna]

@@Anunkindnessofravans It was. But if I hadn't watched it, I would never have donated to help try to make no one ever have to go through this horrible disease again.

[@laurenferrell6013]

How unfair for this beautiful little girl to have her life slowly taken away from her. To hear her mom say that she can’t do a lot of the things that she used to do like sing her favorite songs and say I love you just crushes me! I pray for this family to have God comfort them and guide them through this extremely hard time!

[@celeste41985]

I'm glad Ellery is receiving all her parents love....she such a beautiful girl ❤️

[@jeneinstein]

Thank you for your kind comment and for watching. -Ellery's Mom

[@MidnightTheKitten]

16:07 It’s heartwarming that the kids at her school are so kind to her❤️ She deserves to have friends and I’m so glad that her friends at school made that effort! Honestly those kids are wiser and more compassionate than a lot of adults

[@phyllismandelbaum5550]

For attention? Really? How horrific to tell a parent!! That is infuriating!! The world of medicine is ridiculous sometimes. And as for research, profit should never be the only reason not to study a disease. Yes, I am a person who doesn't always like the world of pharmacy or medicine. Ellery, just be the best you can be for as long as you can. Chris, keep on showcasing the "orphan diseases ". People really need to know and be informed. May Ellery's parents keep going and enjoying her for as long as they can.

[@FreddieCuellar-p2l]

Oh sweet angel. Look at those beautiful blue eyes. I am in tears right now. Jesus please let there be a miracle and heal this child.

[@erinblais1630]

I have watched Batten take someone who was walking, talking and enjoying life to being completely blind, non ambulatory and incapable of basic function. Batten is so destructive. My heart goes out to this mom ❤️

[@sadem1045]

I hope Make*A*Wish sends Ellery to Disneyland or Disney World. Maybe she wouldn't be able to handle the rides but she and her parents could attend "meet and greets" and live attractions. I'll bet they could even reserve an opportunity for her to meet Mickey. It would mean so much to Ellery and the people who love her.

[@zack_einstein]

They sent us to Disney World! She wasn't a fan of the rides, but loved meeting Mickey and the princesses.

[@sadem1045]

@@zack_einstein That's awesome. I'm so happy to hear that 💖

[@mercedes523]

Lord, forgive me for my petty “problems”. God bless this family.

[@sawdust2556]

True love! What a beautiful girl you are Ellery!❤🙏🏻 Ellery’s Mom is the best title ever. God Bless Ellery and your family.

[@shrodingerscat4191]

What a lovely family

[@katherineelisabethbrown4751]

During this whole video I look at mom and hear her wise and beautiful words and I think, "I just love this lady, she is such a wonderful mom!"

[@balaam_7087]

Ellery, we love you so very much. Every single person watching this video loves you for the kind, sweet, beautiful little girl that you are. @Chris: I particularly liked the title of this video, it resonated very strongly with me in the best possible way. I tell you confidently her parents are not the only ones who will love her forever. There are others. Many, many others. Keep up the great work you do, you shining white knight of righteousness.

[@jeneinstein]

Thank you so much for this sweet comment. -Ellery's Mom

[@juanacarrasquillo3001]

My prayer for that beautiful girl, Godblssing,🙏

[@joycewalbert1413]

I am so struck with the absolute BEAUTY of Ellery's Mom ! My gosh! Inside & out- what an amazing ,loving, dedicated human being. Bless each of you, peace and love. You'll ALWAYS be Ellery's Mom - and a living example of GOD's true LOVE for the rest of us. Thank you.

[@jeneinstein]

Thank you so much for watching, caring, and for the sweet compliments. -Ellery's Mom

[@joycewalbert1413]

@@jeneinstein You are an inspiration. I'm holding you in my heart & prayers.

[@jeneinstein]

@@joycewalbert1413 thank you so much. That means a lot.

[@angeladutchlady6464]

I lost my brother to Battens. He will always be my little brother as you will always be Ellery, s mum. Big hug.

[@TWITCHINGDG]

We want to spend billions of dollars on Mars missions & going to the infinite cosmos of space but when it comes to things like this, it seems so small in comparison.🥺 I wish I could hug you both. TW: I know what it's like to have jaded doctors write your concerns off & the anger it illicits. I lost my husband & mother because of it. The fact that you were justified in your concerns & they said "she's doing it for attention" ...would make me want to take EVERYTHING from those doctors who doubted you. It's so hard not to be angry for you guys. She is so precious. 😠🥺😖😭

[@mercedes523]

You are SO right. What a waste of money!!!

[@mandx-chy]

@@mercedes523 its not a waste of money, humanity has to evolve and going to space is one of the ways. of course people should dedicate more time on investigating these illness to stop them but that doesnt mean we cant discover new things

[@kingwillie206]

You are wrong for complaining about investing in space missions. From those missions come new innovations and technologies that lead to things like cures for rare diseases and more efficient ways to diagnose illnesses.

[@mydarkterrors]

we should leave space a mistery and focus on finding cures so children don't have to die. helping poor children. it makes me angry af.

[@CornbreadOracle]

The heart lung machine was perfected from information gleaned while creating space suits. That’s the machine that makes open heart surgery possible.

[@CosmicFox808]

These parents are incredible. Thank you both for your openness

[@jeneinstein]

Thank you so much for watching and commenting. ❤ -Ellery's Mom

[@alec7364]

Our healthcare system seriously needs to be reevaluated. They told them, "Ellery's just looking for attention" instead of taking their concerns seriously and researchers stopped looking for a cure for Batten Disease because it "wasn't profitable". These people are jokes and they make bank off of us, it's sick.

[@sugarcoma7662]

You are the best MOTHER ever... Don't forget how special and loved you are by your baby!

[@beehungry6190]

God bless that mother and the father. And that beautiful child!!

[@littlefishiesinthese]

6:06. Oh my god. That moment where you see her eyes light up because she knew you understood her. So bittersweet.

[@Frosty0762]

I haven't cried yet to one of the videos on this channel... But this one. No parent should have to bury their child. And especially have to watch their child deteriorating right in front of them. She's so beautiful! I can imagine how she was before this video and it made me smile. Watching her correct her Dad about George was so silly and cute. I'm sure it's been so frustrating for her to get her point across and not being mobile as she was and slowly losing it, it's probably ao confusing for her. This family is so strong. Especially that little beauty ❤ sending prayers for the family and hoping this brings more attention to this disease! I wish we could stay updated on her. ❤

[@bartholetbay412]

Great video, can relate to this, living with an incurable disease is so hard, but you just have to live life day by day as it goes by (Cancer sucks)...

[@haynesatteh4463]

it is never the end of the world, i had HIV but when a friend of mine recommended a healer and caster for me, and she helped me out and i am NEGATIVE now, i was tested twice and i am free now

[@bartholetbay412]

@@haynesatteh4463 wow, how can i get in touch with her? this healer, does she cure other sickness

[@haynesatteh4463]

@@bartholetbay412 yes, her name is MIRIAM CHAMANI DIETRICH, you can look her up online.

[@bartholetbay412]

@@haynesatteh4463 wow, found her website, thank you very much for this.

[@happyblessed1858]

@@bartholetbay412 Please be careful. You may be sick now but your soul is at stake here. What you were recommended to seek is witchcraft. Place your faith in the creator of all things which is our living God. In this world, you will have many distractions and traps to make you fall for things like a “healer”, all in an attempt to scam you or basically take your attention away from God, especially in hard times. Pray to God, and ask for guidance during this difficult time for you. May God light your path, in Jesus name. You are loved. ❤

[@cindypowell6358]

What a beautiful family. Thank you for allowing all of us into your home by sharing this video. You truly touched my heart DEEPLY. You literally have an ANGEL. Ellery’s smiles & laughter brought me smiles & laughter. Praying for a cure & your peace, strength, happiness & comfort. 🙏💖🙏🤗♾️

[@lauren_WI]

❤

[@lauralove6439]

I can’t even imagine what they are going through.

[@PinkBinx]

Ellery is the most beautiful little girl with an amazingly beautiful smile and is so lucky because she has a very strong family. She is very loved and cared for. Your impact in our lives going to be forever , Blessed be Ellery

[@AvaBunny-o2v]

What a beautiful family I wish them well it must be very difficult and I like that the mom is happy when she does simple stuff like being happy for example yes it might not seem like a lot but for that girl and her family it’s a big deal because it means she is having a good day because am sure with this disease there are bad day or not so good times

[@evangelinagillespie1278]

I had a student with Batten Disease and it was very hard to watch. The girls mother was one of the kindest, strongest women I’ve ever met 💞

[@biddygirl1000]

It is heartbreaking, that Ellerys life was changed as it was. Fortunately her parents love her unconditionally and fill her days with joy

[@patriciaowen9491]

I feel like there is an aspect that (thankfully) is never mentioned in any SBSK video, or even any comments. It's the fact that, until fairly recently, all these beautiful children couldn't have been interviewed at their home with their loving parents. Because children with special circumstances were sent off to live a nightmare at a government facility. I guess what I'm trying to say is how utterly amazing and genuinely loving the parents that Chris interviews are. I am very proud of our society for that. And I'm without the words to convey my admiration for these families!!!

[@mlkh8073]

What do you mean until recently? Like 21. century?

[@julesc1989]

@@mlkh8073 up intill the mid 1950's or so

[@Chronicmom68]

Sweet Ellery. My heart breaks for them all.

[@biffedya]

my heartstrings are connected now to this sweetheart and she is in my thoughts now and forever in my heart

[@junehenderson7072]

She's ABSOLUTELY BEAUTIFUL...GOD BLESS her and her FAMILY .🙏❤️...I will keep your daughter and your family in Prayer.

[@saibisureddo5657]

How down to Earth this mother is was very refreshing. I know how much and how important and special your child is but so many parents get very unrealistic in how they perceive their kids. This mother is very loving and kind but stays very tempered and realistic about the disease and her development progress before and after. This person will be a very good mother to future children as she is to this beautiful child. Whoever she raises in her life including this child will live their best lives thanks to this mother.

[@jeneinstein]

Thank you so much for this beautiful comment. It means a lot. I'm so lucky to have Ellery in my life and I love her for who she was before the disease, who she has become thus far during her regression and who she will become in part because of the disease. Being Ellery's Mom is one of my proudest sense of identities and I will always be proud to have had her and loved her. Thanks again for watching and commenting.

[@Gem-e7l]

Dad you demonstrate daily that you are a strong, determined and supportive man for what your family need❤❤❤❤❤❤so much respect for you both as parents😢😢😢😢❤❤❤❤❤

[@tsot9837]

You Sir, are a great man. The parents are great parents. I love your channel. You have such compassion. These are people, deserving of respect. We are all connected, but it’s hard to feel that with so much negativity in the world. Keep doing what your doing. It’s important.

[@amberb.5964]

3:40 In and im already crying. You can literally feel this incredible mother’s emotions through the screen!! My heart is with all of you guys, such a beautiful family. ❤

[@janetleeharrison]

Ellery is such a beautiful little girl. I am so grateful that she has the most loving parents to care for her. Mom seems tough as nails to me - go mom! Her dad is so calm, caring, and PRESENT in their lives - go dad! Enjoy your gift of time with Ellery. Thank you for sharing your daughter & her diagnosis with all of us.❤❤❤

[@jeneinstein]

Thank you for watching. ❤️ - Ellery's Mom

[@janetleeharrison]

Have a fabulous weekend 😊

[@ood9700]

A little bit off-topic but Ellery is one of the most beautiful names I’ve ever heard. It suits her well.

[@nathaliemccaughey5456]

While watching these beautifull parents, I thought of the saying "you only know how strong you are, when being strong is your only option left". Thank you for sharing a bit of your journey.

[@fredhasopinions]

Such amazing parents, I wish them all the best. Every child in the world deserves a family like them.

[@allie54774]

What a sweet beautiful girl. Sending love to her & her loving family ❤

[@eijiroukirishima1600]

It astounds me how I can literally feel so much love coming for this family. You can just see how much her mom and dad love this little girl