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/
@avainspired2 жыл бұрын
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
@guineveremoonmist10602 жыл бұрын
Thanks for the info!❤❤❤
@elisabeth2782 жыл бұрын
So does Ellery know that she can’t do these things anymore?
@ghostplays72992 жыл бұрын
Hold up why does Batten disease sound a lot like sandphelepo syndrome?
@DudeWhoSaysDeez2 жыл бұрын
@@avainspired That is where government should step in and fund the research through performance-based grants
@bbhdd61812 жыл бұрын
“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-mb3oh2 жыл бұрын
Same…. My daughter has Batten.
@MISNM02 жыл бұрын
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.
@bbhdd61812 жыл бұрын
@@Bl-mb3oh I’m really sorry. I hope you can live in the present. Wishing you and your family a wonderful Christmas x
@SueP-D2 жыл бұрын
It’s a very strong sentiment
@joserubio96152 жыл бұрын
@@Bl-mb3ohGod Bless you all! Have a merry Christmas I pray your Daughter and your family have a blessed year
@travelbird4644 Жыл бұрын
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 Жыл бұрын
That's heartbreaking
@kathyjohnson2043 Жыл бұрын
I'm so sorry for your loss.
@globalwarmhugs7741 Жыл бұрын
I cannot imagine your pain. Sending love. ❤
@vp0617 Жыл бұрын
What was her name?
@TheDenizxo Жыл бұрын
Omg I am so sorry for your loss of ur beautiful angel. I hope in the next life u will meet again one day 💗
@katiekawaii2 жыл бұрын
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 Жыл бұрын
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 Жыл бұрын
What? Kids do stuff just for attention all the time
@sweetgirl070707 Жыл бұрын
@@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 Жыл бұрын
Precisely.
@PomegranatePomPom Жыл бұрын
Yes, if a child really do something "for attention". It's that there's a deeper psychological issue etc. It's not something irrelevant.
@DoNotLoseTheMoon2 жыл бұрын
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.
@jeneinstein2 жыл бұрын
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
@craigward76912 жыл бұрын
@@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.bauhaus18312 жыл бұрын
@@jeneinstein sending love, y’all are so strong
@LadyTidePod2 жыл бұрын
I thought this as well!
@myheartwillstopinjoy81422 жыл бұрын
@@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 💖
@emmavaughn58652 жыл бұрын
What an incredibly strong, articulate, caring mother. My heart is with all of them.
@jeneinstein2 жыл бұрын
Thank you so much.- Ellery's Mom
@EwaU19742 жыл бұрын
@@jeneinstein ❤ ❤ ❤
@jimjonestown49402 жыл бұрын
Jesus Christ powerful Holy and Saviour Bless you forever friend amen
@22lyric2 жыл бұрын
And incredibly strong (and loving) father. Wish I could hug all three of them. Praying God makes everything easier for them. ❤️🙏
@bileigh8675 Жыл бұрын
- AMAZING DAD too -
@MossyMozart Жыл бұрын
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.
@8lovelynites2 жыл бұрын
I think I speak for thousands who have watched this video - I will never forget Ellery.
@jeneinstein2 жыл бұрын
Thank you so much.- Ellery's Mom
@crystalbaugh51052 жыл бұрын
She is so sweet, a true earth Angel💜😇💜 We love YOU Ellery, keep fighting!
@karikari73362 жыл бұрын
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?
@jeneinstein2 жыл бұрын
@@karikari7336 what a sweet girl you have.
@resilientbeyondwords2 жыл бұрын
Absolutely agree with you. Thank you for saying such. It's true, she is a remarkably unforgettable little girl.
@CarolineMosesComedy Жыл бұрын
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 Жыл бұрын
Thank you so much for having this desire. It could be life changing to families like mine. -Ellery's Mom
@Girlygirlygirl2920 Жыл бұрын
@@jeneinsteinim really sorry about what happened to your kid you guys are strong ❤
@FloridaManFrank11 ай бұрын
Don't lose that drive!
@aztreonamizu9 ай бұрын
I’m glad this video gave you motivation :))
@sebastianblackandwhitewatc27228 ай бұрын
The best of lucks man, I hope your dream to come true, never give up!
@emmy1442 жыл бұрын
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.
@aronlelenora95722 жыл бұрын
❤❤❤❤
@FlickeringEmber2 жыл бұрын
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.
@sarazink22372 жыл бұрын
I also have never heard of this and couldn’t image the heart break they go thru 💔
@evonnewhalen97948 ай бұрын
I love Ellery’s name. Not only is her name unique it’s beautiful as well ❤. She is absolutely beautiful 😍
@aprylrittenhouse45622 жыл бұрын
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
@emily32 жыл бұрын
This broke my heart, you’ll always be a mom who loves her son. 😭❤️
@Gretaplays2 жыл бұрын
Sending you so much love. A mom will always be a mom ❤
@aprylrittenhouse45622 жыл бұрын
@Lin M that's right lots of love
@kellyharrington29492 жыл бұрын
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. ❤
@MrsGlynn072 жыл бұрын
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.
@sweetgirl0707072 жыл бұрын
I didn't know this child existed 10 minutes ago, but I swear I genuinely love her so much.
@OversizedSausage2 жыл бұрын
The innocent should always receive love
@dnagoddesshealings2212 Жыл бұрын
Me too, I feel this sooooo much! 🥺🙏🏼💗
@angmoulton8528 Жыл бұрын
I know right 🥺❤️
@rae7864 Жыл бұрын
Right?? Me too. I'm a mom and I just...love her. I want her to be okay.
@AmyBumble7 ай бұрын
Same. I feel her mother and her emotions in my bones. My heat is with this family.
@Mysteriousheadlines2 жыл бұрын
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
@absolutelyridiculous67432 жыл бұрын
Two?! Oh, man...my heart goes out to your friend.
@MISNM02 жыл бұрын
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.
@lovingmayberry3072 жыл бұрын
Could you tell us the name of the non-profit?
@a-girl-and-her-cat2 жыл бұрын
@@MISNM0 you are so sweet, but OP's friend with the 2 daughters has the non-profit ♡ Ps; I also loved him as Gideon :)
@MISNM02 жыл бұрын
@@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.
@FresnoRays3 ай бұрын
You can just feel her pain, distress, and anguish in her voice as she tries to communicate to no avail
@natashacartwright79412 жыл бұрын
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
@TheKatarinaGiselle2 жыл бұрын
Thanks for sharing that. How did he recieve the video?
@jeneinstein2 жыл бұрын
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
@lenacheney2 жыл бұрын
@@jeneinstein your daughter is such a beautiful little girl
@jeneinstein2 жыл бұрын
@@lenacheney thank you so much. 💓
@caswanden4542 жыл бұрын
@@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.
@oriaaspenalexander2 жыл бұрын
Despite being completely tone deaf, Chris loves to sing to these kids because they love to hear it, and I just love that.
@FluffyEclairs Жыл бұрын
Chris is terrible at singing 😆
@mosseisleyYT Жыл бұрын
Is _that_ his problem? I thought he just had a lousy singing voice.
@amandaschieber9700 Жыл бұрын
I’ve never heard someone sing twinkle twinkle little star so badly 😅
@florawest93338 ай бұрын
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-5-215 ай бұрын
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.❤
@jessicar32912 жыл бұрын
Wishing this sweet girl and her loved ones peace and comfort in the days ahead.
@jeneinstein2 жыл бұрын
Thank you so much and thanks for watching. -Ellery's Mom
@djeemot37532 жыл бұрын
@@jeneinstein try to find the word dumb fhiurfiuehftuefueifdumbf4iefvniuiuhveefiuvdfiuhvuieiuhcuirfhvihievuiefijuefiuguirtniuugtrhiuviurirvthukrtjortglkorfwgl Fertility Gljirtgkugtrngrbbrggrb
@djeemot37532 жыл бұрын
@@jeneinstein try to find words jjjhujuhuhjibkihnijjj huhhuhjuujhhujhyujyhujhyujgbujtbgbjuugbstuffjjjjihhhhijyhjihhikyhuyjhgbjugjjfunnyjjjjnhhhhhhhhhhjjjjhhbhbhbhhhjhhhhhhjimmyjfjfrhhfjufguhtghugtujgtujtjjtgjjggjhgtjjgtuhttujhgujhgujtgjutgjjtweneedpeaceintheworldkgjgijggijggijghjigkiffkideijffkifvkmff Clue there’s 4 words
@angelicaquirarte2 жыл бұрын
@@jeneinstein whising your little girl,you and her love ones just the best love from mexico 🇲🇽
@myishacherry72422 жыл бұрын
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..🙏🌹
@therecklessmoonchild2602 жыл бұрын
I love how Ellery is always correcting her dad saying “ and George” 🥰 such a sweet personality
@asiajo9992 жыл бұрын
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 ❤️
@jeneinstein2 жыл бұрын
Thank you so much. -Ellery's Mom
@alliexcx55762 жыл бұрын
@Jen Einstein you are such a great mom!
@jeneinstein2 жыл бұрын
@@alliexcx5576 thank you. Ellery is the best part of me.
@jeneinstein2 жыл бұрын
@Michael Morbius this not at all an appropriate place for you to insert your religious beliefs. So horrifically inappropriate.
@stepht7508 Жыл бұрын
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 Жыл бұрын
I'm sorry to hear about what you and your partner are going through. I'm glad my words could help you.
@BlissBee11 ай бұрын
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
@kloee725410 ай бұрын
her brain may forget but her soul will not. and it will search for you again
@Xenonmorph__2 жыл бұрын
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.
@jeneinstein2 жыл бұрын
Thank you so much. We are so lucky to have her. -Ellery's Mom
@mikaelastefkova Жыл бұрын
@@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
@juliushenry90922 ай бұрын
@@mikaelastefkovasame
@DougNoel-f7t2 ай бұрын
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.
@Marchingvenusaur2 жыл бұрын
Their doctor telling this mom at first that her daughter was doing it for attention is pretty vile. I physically cringed at that.
@mosseisleyYT Жыл бұрын
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._*
@Skyebright111 ай бұрын
Yeah it was good that the physical therapist realised it was a neurological issue
@kingcrimson2347 ай бұрын
They weren't a specialist, and this is a very very rare disease. I don't blame the doctor.
@kittenparty43566 ай бұрын
@@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.
@JDog26564 ай бұрын
People make that assumption all the time. With only a small percentage of the time it will be true
@simonegacia4429 Жыл бұрын
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.
@BEE003SXP2 жыл бұрын
Ellery has such strong parents. It's inspirational how positive they are.
@jeneinstein2 жыл бұрын
Thank you so much for your sweet comment. -Ellery's Mom
@bugsbunnypoo2 жыл бұрын
@@jeneinstein your such a good mom it actually makes me wanna cry 😭 (not sad)
@dfgdfg_ Жыл бұрын
What a lovely Dad ❤❤❤
@jeneinstein Жыл бұрын
He's pretty wonderful. -Ellery's Mom
@jhayejarvis2 жыл бұрын
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. "
@kenzielynn10472 жыл бұрын
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.
@norse_cat2 жыл бұрын
This poor woman has been through so much. It isn’t fair at all but she seems very strong.
@jeneinstein2 жыл бұрын
Thank you so much. ♡ -Ellery's Mom
@kellystanley58928 ай бұрын
Ellery's parents are so inspirational .They gave me a new way to look at things.Amazing family.Ellery is so precious ❤
@user-lb9de4ej4q2 жыл бұрын
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.
@jeneinstein2 жыл бұрын
Thank you so much. I love her with all that I am and so much more than I love myself. ❤️, Ellery's Mom
@emily32 жыл бұрын
@@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!!
@jeneinstein2 жыл бұрын
@@emily3 thank you so much for your kind words. She is the best part of me.
@emily32 жыл бұрын
@@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!
@1rage172 жыл бұрын
@@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.
@lucanhenrique7457 Жыл бұрын
She is the most beautiful little angel
@jeneinstein Жыл бұрын
Thank you so much.-Ellery's Mom
@KaltrinaDemiri2 жыл бұрын
You can see the sadness and hurt in the mom's eyes. No one deserves to go through this.
@jeneinstein2 жыл бұрын
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 Жыл бұрын
It’s not sadness, It’s just the privilege and emotion of having such a princess ❤
@MiguelLopez-bq6wf Жыл бұрын
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 😊😊
@ChevyGuy702 жыл бұрын
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.
@radioaktiv78412 жыл бұрын
I've met many Special Education teachers, very very nice people. God bless you for caring for these people.
@shoosh2222 жыл бұрын
I’m a 5th grade ELA SpEd teacher. I would never do anything else. My students have my heart.
@terricolarusso2639 Жыл бұрын
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 😢
@laurenbendik20062 ай бұрын
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.
@everydaynicole12 жыл бұрын
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 Жыл бұрын
How old were they when they were diagnosed? How many years did he live with it?
@Noelliuss2 жыл бұрын
This mother is one of the sweetest persons I've ever seen ❤️ all my love to this family
@zack_einstein2 жыл бұрын
I agree! 😉
@rosemuchina49862 жыл бұрын
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
@laurenferrell60139 ай бұрын
Oh my heart!!!!! To hear her PRECIOUS voice say “icky house” (Mickey clubhouse) just melts my heart!!!!
@tgrabowski5178Ай бұрын
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.
@franco_d242 жыл бұрын
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
@jeneinstein2 жыл бұрын
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
@icy84032 жыл бұрын
@@jeneinsteinis this disease similar to what sanfilippo syndrome does?
@jeneinstein2 жыл бұрын
@Icy it is similar, though I believe that children with San Fillipo tend to have a somewhat longer lifespan.
@icy84032 жыл бұрын
@@jeneinstein ah alright, thank you. Wishing you all the best ❤️
@ezzyalvarez72062 жыл бұрын
This comment was unnecessary....
@Shelleybelly-vt4tw9 ай бұрын
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!
@umbreonespeont62 жыл бұрын
Thank you for this wonderful channel and all that you do. As a disabled person, I appreciate you. Ellery seems so sweet!!
@djeemot37532 жыл бұрын
What disability do you have?
@strisselstudios39322 жыл бұрын
@@djeemot3753 thats alittle insensitive dont you think?
@djeemot37532 жыл бұрын
@@strisselstudios3932 I’m literally asking what disability they have how is that insensitive BRUH
@strisselstudios39322 жыл бұрын
@@comprends2138 i was responding to somebody mocking the person aboves comment.
@djeemot37532 жыл бұрын
@@strisselstudios3932 I didn’t mock them
@shrodingerscat4191 Жыл бұрын
What a lovely family
@mercedes5232 жыл бұрын
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.
@shannon92182 жыл бұрын
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.
@treeyellow46272 жыл бұрын
100%. Don't take anything for granted.
@dolson93662 жыл бұрын
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.
@ElysetheEevee2 жыл бұрын
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....
@sometimesnevernot2 жыл бұрын
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.
@ashleehughes11942 жыл бұрын
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.
@jeneinstein2 жыл бұрын
Thank you so much for your sweet comment and for watching. -Ellery's Mom
@JLC_Subutai6 ай бұрын
Jesus, and to think I was cursing my luck for losing my job, this changes your perspective completely.
@mewkiuu2 жыл бұрын
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 Жыл бұрын
Love to you and yours for your Great Big Heart!
@mercedes5232 жыл бұрын
Lord, forgive me for my petty “problems”. God bless this family.
@marilynpeppers13562 жыл бұрын
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. 💜
@rachelgraham20382 жыл бұрын
❤❤❤❤❤
@DaniBadger7772 жыл бұрын
I am so sorry for your loss 😞
@marilynpeppers1356 Жыл бұрын
@@DaniBadger777 You are kind. Thank you.💜
@Autumn_Forest_ Жыл бұрын
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). ❤
@juanacarrasquillo30014 ай бұрын
My prayer for that beautiful girl, Godblssing,🙏
@lockedherselfout Жыл бұрын
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 Жыл бұрын
Thank you so much for your compliments, for watching an caring. It means a lot. -Ellery's Mom
@sharon0124902 жыл бұрын
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!
@sawdust25564 ай бұрын
True love! What a beautiful girl you are Ellery!❤🙏🏻 Ellery’s Mom is the best title ever. God Bless Ellery and your family.
@lenacheney2 жыл бұрын
"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 Жыл бұрын
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 Жыл бұрын
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 Жыл бұрын
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
@Gem-e7lАй бұрын
You are all amazing. ...mummy and daddy you are so strong and making sure your daughter is content and happy and given this awful disease I have to say that people in the face of adversity are the most amazing people. I'm so sorry for Ellery's diagnosis but mum you are utterly amazing ❤❤❤❤😢😢😢😢
@williamthomson6388 ай бұрын
She understands what you are talking about, and it upsets her.
@tolees17572 ай бұрын
My heart broke, i love this girl and this family...
@nicolechamberland9959 ай бұрын
That precious little girl has the MOST beautiful eyes! Praying for the entire family. God bless you. Stay strong mommy and daddy. 🤗
@Tigrette-m1xАй бұрын
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.
@Rinzler.142 жыл бұрын
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.
@TheDaniela31122 жыл бұрын
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
@valentinacardona1732 жыл бұрын
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 Жыл бұрын
His work is life changing and can change so many fields from politics to Healthcare. So grateful to have this channel
@Chronicmom686 ай бұрын
Sweet Ellery. My heart breaks for them all.
@celeste419852 жыл бұрын
I'm glad Ellery is receiving all her parents love....she such a beautiful girl ❤️
@jeneinstein2 жыл бұрын
Thank you for your kind comment and for watching. -Ellery's Mom
@beehungry61909 ай бұрын
God bless that mother and the father. And that beautiful child!!
@katherineelisabethbrown4751 Жыл бұрын
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!"
@angeladutchlady64642 жыл бұрын
I lost my brother to Battens. He will always be my little brother as you will always be Ellery, s mum. Big hug.
@MidnightTheKitten Жыл бұрын
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
@sugarcoma7662 Жыл бұрын
You are the best MOTHER ever... Don't forget how special and loved you are by your baby!
@laurenferrell60139 ай бұрын
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!
@FreddieCuellar-p2l7 ай бұрын
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.
@erinblais16302 жыл бұрын
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 ❤️
@allie5477411 ай бұрын
What a sweet beautiful girl. Sending love to her & her loving family ❤
@SarahPriceHancock2 жыл бұрын
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.
@jennifereinstein64822 жыл бұрын
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 Жыл бұрын
@@jennifereinstein6482 can you use one where she uses her head to activate it?
@jennifereinstein6482 Жыл бұрын
@@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.
@bmcdermott5 ай бұрын
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.
@alec73642 ай бұрын
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.
@phyllismandelbaum55502 жыл бұрын
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.
@Gem-e7lАй бұрын
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😢😢😢😢❤❤❤❤❤
@littlefishiesinthese Жыл бұрын
6:06. Oh my god. That moment where you see her eyes light up because she knew you understood her. So bittersweet.
@biffedya7 ай бұрын
my heartstrings are connected now to this sweetheart and she is in my thoughts now and forever in my heart
@ood9700 Жыл бұрын
A little bit off-topic but Ellery is one of the most beautiful names I’ve ever heard. It suits her well.
@cindypowell63583 ай бұрын
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_WI3 ай бұрын
❤
@evangelinagillespie1278 Жыл бұрын
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 💞
@rochellespinale8 ай бұрын
This entire family is such an inspiration. I wish that this world had more people like this. ❤
@CosmicFox808 Жыл бұрын
These parents are incredible. Thank you both for your openness
@jeneinstein Жыл бұрын
Thank you so much for watching and commenting. ❤ -Ellery's Mom
@tatianaflores1926 Жыл бұрын
Pure love from her Mommy and Daddy. The kisses are precious
@CherityTherarè2 жыл бұрын
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. 😠🥺😖😭
@mercedes5232 жыл бұрын
You are SO right. What a waste of money!!!
@mandx-chy2 жыл бұрын
@@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
@kingwillie2062 жыл бұрын
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.
@mydarkterrors2 жыл бұрын
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.
@CornbreadOracle2 жыл бұрын
The heart lung machine was perfected from information gleaned while creating space suits. That’s the machine that makes open heart surgery possible.
@biddygirl100010 ай бұрын
It is heartbreaking, that Ellerys life was changed as it was. Fortunately her parents love her unconditionally and fill her days with joy
@Naughtydahmer Жыл бұрын
Oh my god she’s so incredibly sweet ❤❤❤❤
@amberb.5964Ай бұрын
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. ❤
@Frosty076211 ай бұрын
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. ❤
@Nightfighter827 ай бұрын
She is so adorable and so sweet. She is so full of love. I hope a cure can be found as soon as possible. Enjoy all the cuddles and love you can.
@elishh81732 жыл бұрын
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 ♡♡♡
@Anunkindnessofravans2 жыл бұрын
This was a tough one to watch
@mahna_mahna2 жыл бұрын
@@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.
@e.b.4379 Жыл бұрын
What a wonderful mother!
@kimberamweg1917 Жыл бұрын
It's a terrible reality that research is so expensive. Just doing a single research project is so incredibly expensive. In many cases it's not that nobody wants to research the condition, it's that they can't get the funding from anywhere and unfortunately, that's literally how many researchers get their paycheck. We desperately need more federal funds for these kinds of forgotten diseases and disorders.
@InnocentChild0_03 ай бұрын
I wish I had a loving mom like this :(
@lisamcilvain49923 ай бұрын
Chris, there isn’t a child out there that you can’t make laugh ❤🥰
@mrsmack58084 ай бұрын
Love seeing how the mom is a testimony to the power of God and how doctors cant predict everything. She seems incredibly intelligent and able to do so much.
@nathaliemccaughey54562 жыл бұрын
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.
@eijiroukirishima160010 ай бұрын
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
@fredhasopinions9 ай бұрын
Such amazing parents, I wish them all the best. Every child in the world deserves a family like them.