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

Thanks for the info!❤❤❤

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

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

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

Same…. My daughter has Batten.

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.

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

It’s a very strong sentiment

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

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.

What? Kids do stuff just for attention all the time

@@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.

Precisely.

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

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

@@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.

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

I thought this as well!

@@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 💖

That's heartbreaking

I'm so sorry for your loss.

I cannot imagine your pain. Sending love. ❤

What was her name?

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

Thank you so much.- Ellery's Mom

@@jeneinstein ❤ ❤ ❤

Jesus Christ powerful Holy and Saviour Bless you forever friend amen

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

- AMAZING DAD too -

Thank you so much.- Ellery's Mom

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

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?

@@karikari7336 what a sweet girl you have.

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

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

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

Don't lose that drive!

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

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

❤❤❤❤

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.

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

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

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

@@jeneinstein your daughter is such a beautiful little girl

@@lenacheney thank you so much. 💓

@@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.

The innocent should always receive love

Me too, I feel this sooooo much! 🥺🙏🏼💗

I know right 🥺❤️

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

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

Chris is terrible at singing 😆

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

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

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 🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️🙏🏻♥️

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

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

@Lin M that's right lots of love

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. ❤

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.

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._*

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

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

@@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.

​@@kingcrimson234It took me about 30 years to realize you have ti go to a specialist for basically anything that isn't the common cold. Those GP doctors are in the habit of antibiotics, steroids, and their own closed-off opinions since that's what they see most of the time. They have a huge bias.

Thank you so much. -Ellery's Mom

@Jen Einstein you are such a great mom!

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

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

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

@@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

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

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.

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

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

@@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.

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

@@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!!

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

@@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!

@@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.

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

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

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

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

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

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

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

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..🙏🌹

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

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

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

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

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 😢

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

@@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

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.

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.

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

I agree! 😉

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

Thank you so much. ♡ -Ellery's Mom

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.

100%. Don't take anything for granted.

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.

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....

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.

Thank you so much.-Ellery's Mom

Love to you and yours for your Great Big Heart!

What disability do you have?

@@djeemot3753 thats alittle insensitive dont you think?

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

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

@@strisselstudios3932 I didn’t mock them

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

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

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

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 😊😊

He's pretty wonderful. -Ellery's Mom

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

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

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

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

This comment was unnecessary....

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

❤❤❤❤❤

I am so sorry for your loss 😞

@@DaniBadger777 You are kind. Thank you.💜

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). ❤

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.

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

@@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.

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

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.

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.

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

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

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

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

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

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

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

@@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. ❤

This was a tough one to watch

@@katieyoung831 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.

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

If God was responsible for her family, it is also responsible for the decease in the first place.

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

Thank you for your sweet comment and for watching. ♡ Ellery's Mom

Thank you for watching. ❤️ - Ellery's Mom

Have a fabulous weekend 😊

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

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

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

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

You yourself are an amazing mother! I have cerebral palsy and I would not be the person I am without my parents. I'm sure your son has a long full life ahead. (I'm 62😊) God bless you, your son and all of your family.

Just for your education and positivity, cerebral palsy is not a disease: "a particular abnormal condition that negatively affects the structure or function of all or part of an organism, AND that is not immediately due to any external injury." CP is a syndrome in that it manifests in a variety of ways. The good news is the damage is done. In your son's case, the stroke -and the labor that caused it- that caused his hemiplegia is over. And since neurons reproduce throughout life and neuronal pathways and connections grow and change (the technical term is neuroplasticity), your son and his brain have incredible potential. When I was growing up, medicine thought that damaged brain cells did not regenerate. I'm sorry if I got too medical or technical. I'm really telling you that your son is differently-able and he will go far with his mom cheering him on every step of the way.🙏💪

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

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

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

Thank you for your sweet, thoughtful comment and for watching. -Ellery's Mom

@@jeneinstein your welcome, it's only the truth. I will be praying for your beautiful family 🙏 Merry Christmas 🎄

I was thinking of Sanfilippo, though it sounds like maybe there’s less research on Batten’s?

Yes. And Sadie. Sadie is still ve tu verbal and had some enzyme therapy that seemed to work to some degree before the trial ended.

Still very verbal. Typo!

@@annagitana1 Yes! Sadie is so sweet, I love her. And she’s legitimate proof that enzyme therapy works! I wish companies didn’t care so much about profit because sweet kids like her (and others with Sanfilippo and Batten’s and anything similar) deserve a cure, and it seems like they’re on the right track if they would just continue researching.

Yes, and don't forget Logan with Sanfilipo too!

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.

Thanks!