Siblings with Childhood Alzheimer's (Roman and Stella)

[@SpecialBooksbySpecialKids]

You can learn more about Roman and Stella and donate to fund research towards treatment for ASMD at www.saveromanandstella.com/

[@katherineknapp4370]

😊😊

[@enaceccyy]

So heartbreaking 💔💔💔 The parents are so amazing, the way they fight on and keep going. Prayers for the whole family 🙏🙏🙏

[@stacieboo2s]

My heart goes out to U both what a mum and dad U both r, best parents to the best two kids ever, my son had terminal cancer but they tried a clinical trial and he has been cured he was diagnosed at 8 weeks old and got the all clear just past in September there and he is going to be 9 in Dec, I no there is no cure for Ur kids but I do hold hope for them both just with U two also, u no ur own kids and I am so blessed to have came across ur story, it shows that in this video that U cover pretty much all of what we need to no, keep some of ur life private as much as U can, but at the same time share awareness about their story I will keep up to date with all the up dates of where U r today and stuff I bless U and ur family all the best that U can live ur life happy with the way things r I will have U in my prayers also god bless U both xx

[@Lyly-ym8pz]

Ricerca di cosa?? Quella non è vita

[@mariarestrepo5942]

So,sad

[@joellewhite912]

That dad is in permanent grief - my heart breaks for him

[@kerstinnilsson9968]

I think both parents are, mom just hides it better. Such a heartbreaking video to see 😢

[@elliegoldie6140]

Yes I thought so mum seems stronger but we always are.Beautiful parents and children it breaks our hearts.xxxx

[@sarenthar86]

My heart breaks for both parents.

[@harlottesgma7306]

I felt the same. I noticed he didn't give the momma a lot of eye contact. But the love is there you can see. This is a beautiful strong lil family. When Roman said I love you I got the biggest chills and I'm Not crying, You're crying 😢 ❤

[@Crowned921]

I noticed it about 5 seconds into the video. I notice how red his face was. 🥹💔

[@ceatonbusch]

You can see the heart break in Dad's eyes.

[@emiliaroma5543]

My Goodness how can he not be sad.

[@ceatonbusch]

@@emiliaroma5543 unfortunately, I know their pain. My youngest has a rare incurable disease as well. The average life expectancy is 10 and he just turned 9 last month

[@deemariedubois4916]

@@ceatonbuschoh no. I’m so very sorry. Heart breaking.

[@PandoraBear357]

There's a couple of times when you can hear a change in mom's voice where the sadness slips out. I think she's just hiding it better.

[@meldawilliams1829]

Oh dear yes you can blessings 🙌 🙏 ❤

[@analuciamedeiros4828]

it's just so sad. they are mourning their kids while they are still alive, while remembering them when they were still healthy... sending much love to this beautiful family❤

[@JenniferLloyd-h9g]

That's exactly how it is if you have a loved one with a terminal illness like cancer. When my dad was being taken by cancer, I distinctly remember mourning him while he was still alive.

[@RockinStacy]

Yes, we mourn our loved ones with a terminal illness, parents, siblings, etc. However mourning your child/children, is at completely different level of mourning.

[@lisao7600]

It must be so horrible to be stuck inside your mind like those poor children. It doesn't look like any kind of fulfilling life. It seems like it would be like being just a head with only sight and hearing and breathing/smelling. It's so sad they have to live that way. Hopefully this video will bring awareness and maybe there will be more research on it.

[@veroniquedelais4867]

Ne peut on pas prévenir avt conception ce genre de handicap profond??????

[@donnarowlands6426]

1,000,000% unfair. This is not fair to this family. Not one but 2. 😢

[@CaraRamzi]

Roman saying “I love you” back to his mother was one of the most beautiful and precious moments I’ve ever seen. Sending you all so much love I pray for a miracle for you sweet angels. 🙏🏼👼🏼🙇🏻‍♂️🪽

[@tamracommissaris8960]

I was gonna say the same thing ❤

[@CaraRamzi]

@@tamracommissaris8960 🤍🤍🤍

[@CaraRamzi]

@@tamracommissaris8960 💞💞💞

[@karenbors9932]

❤amen

[@kalesmonroe2556]

I thought so too

[@sa-eq1li]

I love how mom describes her babies personalities with pure adoration as she looks at them. So much love in this family🥰

[@lexiohdancer4199]

That little boy worked so hard to express his love for his mother.

[@jessicapreston9808]

He was doing such a good job, sweet boy. When she went down to kiss him you could see him try to purse his lips, he wanted to kiss his mama so bad! I am in tears. What a sad thing, but they are doing amazing and persevering. They are so strong for their kids.

[@KS-om6fm]

This is a beautiful story. These parents are the best. We can see how much they love their babies. They were chosen to be these special children’s parents. My mother has dementia and I can assure you they understand everything they are doing. Most importantly they can feel the love!

[@FunnyClock-su1pk]

That was the girl

[@masayadiaz9030]

I saw this comment before the video and I thought it’d be up for interpretation but that baby very clearly said I love you 🥺🥺🥺 omg

[@jenny5309-k3j]

Seeing baby Roman playing with his dad, seeing his smiles, and hearing his giggles broke my heart. I realize life isn't fair, but...this is way beyond not fair.

[@fairyhaven12]

He will probably have other lives and has had other lives before. Life is fair, we all have many lives and many different situations or circumstances in these lives. Hope only the best for them, and for all

[@catherinerainville4232]

I agree.. weeping. ❤

He will spend eternity with Jesus, whole and strong, when he leaves this sad, sinfilled world 😒

[@karenbors9932]

❤amen love never fails

[@PerfectlyImperfct]

That's about where I started bawling too 💔

[@Angelicax8]

This interview has to go on my top 3 or 5 of the hardest interviews to watch.

[@bbkirbee]

Right?? I was sobbing when she said the life expectancy was three years old

[@AmandaB1111]

I agree.

[@Jesus_Saves_Believers]

Yes, and Dad appears to be fighting tears the entire video.

[@ebert8756]

Yeah, you just never know what you're gonna get 😰

[@billiemack64]

Knowing that the next update about these kids could be they’ve passed is really hard to sit with for me. When Roman tried to say “I love you” I lost it. I feel the tone of some of these comments are just like “oh man that’s terrible, oh well!” This is devastating to me. I can’t imagine trying to cope with this as a parent.

[@Jennifer-rh2yt]

The love this father has for his children is powerful. You can see it in his face and in his physical contact with them. It’s beautiful.

[@margaretandersen9914]

I was holding myself together pretty well until I heard sweet Roman saying "I love you" and then I absolutely lost it. God bless them all.

[@BlahBlah-em2ed]

What a cruel diagnosis. What a strong family.

[@reptoidfancy666]

It also sounds like they were made aware of the risk and decided to have children anyway.

[@SavortheMomentblog]

@@reptoidfancy666if you were paying attention the terminal diagnosis came when their first was already born and she was already pregnant with their 2nd. As you can see the 25% in not what their are will to risk since then only have 2 children

[@TheBradfords]

​@@SavortheMomentblog right they did stop once they found this all out.

[@junefoster924]

They didn't know until she was pregnant with her 2nd child ​@@reptoidfancy666

[@shaleamontanez4591]

​@reptoidfancy666 not the right comment section. Respectfully. Delete this.

[@alijane6675]

What a profoundly painful journey these parents are on. Childhood regressive dementia type illnesses are so uniquely harrowing. I think all parents can empathize with this family. Sometimes life is beyond understanding. I hope one day money won’t be a hindrance to science, and all these rare disorders can be researched properly.

[@Andreabay90]

money isn't the only thing stopping new discoveries, a lot of it is down to luck, and the right scientist(s)

[@virginiaconnor8350]

Is this condition related to ALD, RETT, and Batten? So sad! Could other siblings' children develop this genetic symptom too?

[@conlon4332]

@@virginiaconnor8350 As they explained, there's a 50% chance a child would carry it, a 25% chance they wouldn't have it at all, and a 25% chance they're affected by the condition. If they were to have another child and that child was a carrier, that child would have a 50% chance of passing the gene on to their children, but as it's recessive they would only be carriers like their parent, unless the other parent also carried it when it would be the same chances as those explained in the video and at the start of my comment, but it's a very rare condition so it's very unlikely the other parent would be a carrier.

[@malanamarie5206]

@@virginiaconnor8350 Yes if they have another child that is a carrier and that child’s future partner also carried the disease then their children would have the same chance of developing the disease which would be 25%

[@jassgachogu5873]

There is God in heaven we pray for healing in Jesus name

[@erin5109]

Roman saying “I love you” with all his might 🥹😭 my hearts goes out to this beautiful family

[@aliciasandoval6466]

Es muy triste lo que está viviendo esta familia y nos están demostrando que tienen una fortaleza tan grande, que aman a sus hijos por sobre todas las cosas, que son guerreros que no se dejan vencer y que siguen adelante porque tienen que estar bien para cuidar de ellos. Muchas bendiciones y un abrazo de corazón para toda la familia. Estoy muy conmovida.

[@MeghanMarkleParodyXQueenofMeme]

My heart goes out to this family. 🙏❤️

[@riobrasilsambashowssambist1453]

Heart wrenching. I can't even endure this. They are so strong

[@kathyquinn5504]

These children are so blessed to have the parents they have. May God bless you all.

[@МаринаГайдарь-г5д]

Какой папа порядочный, остался со своей семьёй. Обычно папы сливаются при появлении в семье особенного ребёнка, а тут сразу два особенных ребёнка. И папа рядом ❤❤❤

[@guadalupegarciadura1010]

No entiendo porqué realza tanto al papá, esos dos niños tienen padre y madre, los dos padecen una enfermedad y tanto la madre como el padre cuidan de ellos, porqué le dá más mérito al padre que a la madre ? Porqué debería eludir sus obligaciones como padre y que solo se responsabilizara su madre del cuidado de sus hijos ?

[@Наталья-н4ы5н]

Вас не поняли иностранные граждане) У них не принято "сливаться" из семьи)

[@Userwer850]

А это проблема с генами у папы, они так сказали

[@svetlanakhismatullina2720]

​@@Userwer850оба носители, мама сказала

[@NatalochkaValerievna]

​@@Userwer850 оба родителя - носители. И это не при чём. Проблема, в "совке", который в ваших головах

[@BZaks]

I’m a doctor and in my country we have a lot of marriages the same family trees so I saw a lot of children with lysosomal storage diseases in the hospital and it always broke my heart. But so many families left their children in the hospital when they got this diagnosis so this family is very special and strong to have the children with them and taking care of them at home. I think that’s what’s making the biggest difference in their longevity

[@BZaks]

If the family reads my comment I want them to know that their children were meant to have this life for a reason and it’s not less of a life than that of any other child, they bring joy to their family and they also live a happy life as you can clearly see. Also, your reward for taking care of them is coming. I can’t tell you if it’s gonna be in this life but you will certainly be rewarded. “So whoever does an atom’s weight of good will see it.”

[@patriciarose6371]

Sorry , but I cant and see a brighter side to this! Nor can I accept there is a reseon good enough be it nonsense it is Gods will. Surely God would not do this !

[@corriehordyk3342]

Please read your Bible for the truth. ​@patriciarose6371

[@OrangeySky11]

So, I’m confused. Are the parents related? Cousins maybe? Is that what the doctor said?

[@hees0009]

​@@OrangeySky11no, he didn't say they were related, just that consanguinity increases the risk.

[@Rachel-wp1yz]

I genuinely don't know what to say. Humbling doesn't cut it. Hit me hard when the mum said 'God wouldn't do this to us a second time' . I understand that feeling of not understanding' why? ' I too am currently trying to learn how to pack grief away and let it sit alongside me. A tricky thing to master. Sending this little family love and best wishes.

[@eszemaszeszed]

because god doesn't exist, but their carrier genes do.

[@SN-of5tu]

what a beautiful way to put it. to pack away grief and learn to live alongside it. both of them are incredibly. everyone in this family is incredible. genuine strength from the parents, beautiful souls from the kids.

[@fairyhaven12]

I don't believe God does these things to us. God is love and only love. What human parent would make a child ill? Saying that God does it is making God less good than a loving human parent. I believe we incarnate knowing this physical life is far from perfect, and we create our own reality, knowingly or not. People have their own soul or mind that is carried over from one incarnation to the next. I also believe that we incarnate many times until we have perfected ourselves to the point where we will "fit in" in Heaven. Love, love, only love these children ❤❤

[@peacemama4957]

Rachel I recommend a book called Dark Clouds Deep Mercy by Mark Vroegop. It unpacks God's biblical way of dealing with grief as seen in the psalms - lament. I wasn't aware of lament until my pastor taught me about all of David's psalms filled with his lament. Hope this helps. God bless you in Jesus' name.

[@LoverofSunflowernBees]

@@fairyhaven12so do you believe in reincarnation too?

[@gardengal87]

The dad looks hauntingly sad.

[@asmodeuso27]

Who wouldn’t?

[@cremebrulee4759]

He really did.

[@briarrose5208]

Oh my God, to watch your child develop and then deteriorate, to lose a little piece of them every day.

[@SherryAnnOfTheWest]

I just don't think he has the same way of dealing with it as the mom does ... her way is to learn and talk about it a lot. That doesn't seem to be how he can deal with it.

[@bwingbwinggwiyomi]

​@@SherryAnnOfTheWestI'm like the mum too. I talk to cope. Talking therapy is very useful.

[@kavitadeva]

I've said this many times, but when Chris makes the interview, every Parent is crazy about how AMAZING THEIR VERY DISABLED CHILD IS. No neglectful and not into their child will ever be interviewed. They are NOT a burden to the parents at all. You interview only incredible parents. My mother would have me institutionalized. Seeing this kind of love makes me sad. I never felt loved. Especially this type of love. Blessed kids. Have you ever turned down an interview, Chris, due to the parents not giving loving attention??

[@spazie123]

Chris definitely has a special gift.

[@eleveli2437]

I volunteer at a special school with children with such conditions (my brother also is disabled) and I’ve found that the parents of these kids are the most loving people and treat every small achievement their kids have like the greatest thing. Sometimes the thing that keeps these kids going is the unconditional love and care they get from their parents. I’d say that kids who don’t have such parents don’t live long enough to be interviewed.

[@mskyn150]

Unfortunately we can't choose the family we are born with, but you can choose your REAL family as life progresses. Hope you get the love you're looking for. -Love from Las Vegas...❤

[@Moonbunny55]

‘The hardest part was getting to know your son and daughter and who they really are only to watch that slip away’ How heartbreaking 💔

[@beatrijsvannuffel1922]

❤

[@420skidrow]

one day they will be together in heaven. GOD bless this family

[@lanigouws3525]

That's what a lot of parents with kids on the autism spectrum experience too.

[@spulwasser]

As unfortunate as these kids are, I am so glad they have these phenomenal parents. They know they're loved❤

[@DaniBadger777]

These children are not unfortunate, their conditions are.

[@kantnergirl08]

These parents are truly GOLD!!!!

[@kellyburnett1833]

No one could possibly understand what these parents have to go through. I am in awe of this family. Love is the strongest and best thing in this world and it is displayed so perfectly with them. Thank you for sharing, it helps me see the world in a more positive way.

[@ercieberwick1513]

When she was expecting their second child, she said "God wouldn't do this to us a second time." GOD HAD NOTHING WHATSOEVER TO DO WITH THIS!

[@batacumba]

@@ercieberwick1513 i don’t know why anyone would think that anyway given how genetic conditions are often passed down like this. Like yes if you’re a carrier for something like this it absolutely will strike more than once if you keep having kids. Genetic testing before having kids is the answer to preventing these kinds of ailments. Yes it’s a harsh reality but right now it’s the only way to prevent this kind of devastating outcome.

[@Doro260]

Life is worthy, above our immagination

[@user-gd1tp2tc1d]

@@ercieberwick1513 some people connect their gift of having children with God blessing them so it makes sense why they would say that

[@eggbun1856]

​@@ercieberwick1513 so thank God when a baby is born healthy, but when a baby is born sick God had nothing to do with it? 😏🥴

[@craftylabtech6802]

As a lab tech... I can absolutely appreciate how devastating that error was.

[@icecream_andcookies]

I imagine the person making the mistake call, and the secondary informative call, were beside themselves with grief. I would feel absolutely horrible 😫

[@MissTXTee]

I will always remember overhearing an angry OBGYN doctor trying to understand how a patient received incorrect test results. Needless to say my appt was canceled, so the situation could be properly addressed.

[@CW-rt4sr]

Chris, I think you simply showing yourself sitting with the children and speaking directly to them is so powerful. Thank you. It brought me to tears.

[@vm51photo]

Always ❤ His respect always shines through 😢

[@BreatheEasyWithShelly]

He is their father lol

[@beyounow7204]

When Roman said I Love You…❤ We you too, Roman. All of you. 🙏🏾

[@kantnergirl08]

That was my favorite part too!!

[@ameliab324]

When they showed Roman at like 6 months old, I felt heartbroken. This little happy baby didn't deserve such pain and suffering.

[@karinkerna4625]

real

[@brittnyann]

Same I started tearing up 😥 it must be so heartbreaking to see your child slowly slip away.

[@doberspirit]

And when he tried to say I love you to his mum. He did not let that to be taken away by the illness ... I broke into pieces

[@WendyLopezGazquez]

Do they ever deserve this? No child deserve this.

[@Rachel-wp1yz]

​@@doberspiritme too. Heartbreaking

[@juliastreet4539]

My son has a lysosomal storage disorder too, and just like your children it is life limiting. He is a year old now and we know he won't see his second birthday. I never knew what LSD's were before he was born and it has been so hard seeing other people's kids reach milestones he never will, even early ones like lifting his head. We find joy where we can (he gives the best snuggles with his whole body), but i fully agree with needing to let yourself feel the grief but then find a way to move on and not get sucked in. Best of luck to your family, I am in it with you.

[@1pootle]

Blessings to you. I ask that you be held in divine love at this time. 💚🙏

[@chixbleau7321]

May you cherish every moment with your son..feel the love ❤️..it’s the best feeling a mother and child..can feel..

[@tulipgirl3k]

❤️‍🩹

[@9AcreBaker]

💝❤️‍🩹🧡💛💚💙🩵💜

[@hollyhock3945]

🙏🙏🙏

[@axeki9361]

I’m not normally the type of person to comment on things but I honestly just have to say that this channel and now this story in particular is so so amazing. It really puts everything in life into perspective, and shows you some of the most amazing people who we would likely never see or hear about otherwise. Mom and dad here are doing such an amazing job and I send them all the prayers in the world ❤

[@CW-rt4sr]

Jill, your explanation of the diagnosis was incredible. Thought out, accessible, loving. Thank you for taking time to share with us.

[@blackfox1320]

These are two of the strongest people in the world. Unbelievable what they're enduring and pushing through for their kids.

[@NeeNee_B.]

But they're the ones who put their 2nd child thru this in the first place. They knew she would be ill but had her anyway. Why would they get praise for knowingly sentencing their child to a life of pain?

[@aurorallamosas2899]

Son un matrimonio muy fuerte y sólido,y eso les da fuerza y amar a sus hijos,es duro verles bien y después retroceder pero creo que son seres de luz y harán el tiempo que estén con sus hijos su estancia en esta vida sean niños felices ,tomo mi cariño y admiración para ellos.☘️☘️☘️💚💚🍾🌈🌈🙏🙏🙏💕💕💕💕💕💕💕🙏

[@natachapascale1648]

@@NeeNee_B.in their words they thought 25% wasn’t a huge chance and they thought “God wouldn’t put us through this again” regardless a chance is a chance and it was reckless on their part but I understand it came from a place of hope and faith

[@dizzzawn]

I love how the Dad was so happy and smiling as you read the book to Roman. That made me smile. He and the mom deserve all the little moments of happiness and joy possible.

[@francesluther9518]

You can see da

[@francesluther9518]

Dad has soul eyes. You can see all the love, but you caalso see his fear and heartache. Praying for yalln

[@boochy115]

That video of Roman saying "I love you" broke me... What a beautiful family. God bless them.

[@catherinerainville4232]

Me too!!

[@JayJay-tm7xw]

He’s just parroting.

[@ShellieSager]

This is heartbreaking. They look like an amazing couple doing an amazing job with what they were dealt. They obviously have a very strong commitment to each other, and I hope they have lot of love and support from their family for the duration of their children’s lives.

[@marinettegerber5601]

These kids are blessed with amazing parents. Their strength and resilience is astounding and I truly hope and pray they have many happy years together ❤

[@kandacekirsch]

I cried when Roman said “I love you” back😭😭😭😭

[@BigAphmauFan]

Me too💔

[@roisindubh02]

Yes.💔

[@monicasuissa2026]

Me too

[@simpforsupersoldiers]

Literally sobbing. These parents are saints. Many people could not handle this, especially talking about this condition.

[@BlessedArts]

Me too.

[@healsapphire2842]

I think we all share the same sentiment that this has been one of the hardest SBSK videos ever to watch 💔

[@emiliaroma5543]

TEARY EYES.. I wish I had a magic wand ..

[@Dutch_morrocain]

😢yes. Brokes my heart

[@life_withl]

I cannot have children, but this reality of these parents & children is absolutely 💔

[@catherinerainville4232]

Absolutely.. I couldn’t finish watching. I was weeping.

[@dania_mb0714]

This video broke my heart I can relate. My husband said the same thing” is a 25% chance there’s no way it will happen again”. It did happen again. The first time we lost our baby boy on October 4,2012 he was just 3 days away from turning 11 months. I had my baby daughter on Dec.10,2022 she passed away on Dec. 9,2023 one day from turning one. Genetic diseases related to the brain need new research but unfortunately we forget about the little ones our babies. Mom and dad both of you are doing an amazing job carrying and loving your beautiful babies.

[@angelaschaefer5883]

I am so sorry for your loss. You are more research into kids with neurological disorders.

[@dania_mb0714]

Thank you 😔@angelaschaefer5883

[@НадеждаЮсова-т2м]

😢😢😢🙏

[@riobrasilsambashowssambist1453]

25% chance is a huge chance

[@Jessi-Muck]

I feel sorry for your loss.

[@DTinker2112]

I was so taken with how strong both parents are. I couldn’t stop crying when I first started watching this. My heart aches for these children, but they have amazing parents who obviously love them with every ounce of their being. God, please watch over this family. Sending you my prayers, love and admiration. ❤

[@plammijr]

My wife, Becci, and I have a special needs son with autism and OCD. He used to have seizure disorder and a lot of things that were very troubling. He is turning 30 next week and, while his diagnosis is far different, we understand the love and dedication that both of you have for your children. We love you and we honor what you’re doing.

[@gennifergirardello8417]

Roman saying I love you just shattered my heart. I had to take a break from watching this and just cried while hugging my kids. These parents are just incredible

[@BigAphmauFan]

Made me cry too..,..so heartbreaking. Reminds us to never take even the smallest things for granted

[@juliej5917]

My sister and I were pregnant together, and her baby Gregory had many health problems. Gregory passed away at 6 mos, and my sister at 39. And they’re together. Tough journey. Love to this family.💙💜🩵

[@irenebetros2691]

My condolences to you Julie and your family. I am so sorry for what you all have gone through. God bless to you and your family as well as this other beautiful wonderful family xo

[@juliej5917]

@@irenebetros2691 That’s very kind of you, Irene. 🌼

[@roxieearly9484]

Sorry for your loss my dear life is hard

[@DefiantAngel87]

I'm so deeply sorry

[@lorettaj6995]

So sorry for your loss of your Sister and her baby. Prayers for you and your family. 🙏

[@tracy9397]

This has to be one of the top hardest interviews I have ever watched. The little boy seemed like he was so full of love and laughter.

[@janootie184life8]

What beautiful children and the best parental support a child could have. God bless this family.

[@AngieRocha-c7f]

This so heartbreaking, but I admired those parents who are so positive in taking care of of them, as they don’t know how long they will be around , they are just loving them, and are very proud of them, with so much love. May Our Blessed them with His care. ❤❤❤

[@BakuraLOLZ54]

This is one of the most devastating genetic diseases 💔 I wish there was more research for treatments into this.

[@zoeyrochellezhombie829]

There can't be research if nobody knows about it. Genetic diseases aren't always treatable.

[@jackson2009ify]

Yes but money is needed.

[@lucianaromulus1408]

Anything brain related, this and prion diseases I feel should take precedent above all else, especially for kids.

[@FRAME5RS]

​@@lucianaromulus1408Sadly, if it's rare, it doesn't get any money. 😢

[@TinyStar-oz3bo]

​@@lucianaromulus1408Instead of progress, seems like we're just seeing stuff like this more and more. Something in our environment may be causing genetic damage. Hope these parents stop having bio kids now. Poor family

[@kantnergirl08]

GREAT Family! LOVE LOVE LOVE this family! I’m their nurse when they need me and they are truly beautiful people inside and out! Please support them anyway you can! They never give up! They are so resilient even when they’ve dealt with soooo much!!! The kids are adorable and beautiful too I love them so much!

[@wowzatrishiebunz]

Bless you

[@vaf]

No you're notbecause this comment would be a hippa violation

[@marialopez1622]

I have fallen in love with this family🙏🏽🙏🏽🙏🏽 what amazing beautiful people! There should be more human beings like these soles in the world!❤❤❤

[@blingqueen2235]

@@vafI don’t think they are giving away any PHI

[@Bethany0420]

​@@vaf How is it a hippa violation? They haven't released any personal medical information..

[@lulucakelove]

I love the little home videos in between, it really adds a personal touch ❤

[@nightyew2160]

Yes, I am so grateful to them for letting SBSK share them. What a blessing to have recordings of these precious memories with the children.

[@anjalimukundan1997]

As a doctor I can only say that try to never do consanguineous marriage and if you are rich get genetic testing done as pre wedding gift to yourselves if you have any family history of malignancies, genetic disorders some psychiatric disorders or genetic counselling and test for stds pre wedding too.. medical fields is expanded vastly.. make use of it.. These parents are doing their best and I can only think what they are going through mentally physically and emotionally.. kudos to them! Bless them and their families! ❤️

[@kyla6538]

These are 2 of the most loving parents I've seen on this channel. Its like I can feel how much they love their kids just through this video. I can also feel the dad's heartbreak like how he explained how they can walk in a room and sense how a person feels, well I can watch this video and clearly see how broken his heart is. It seems the mom is staying the "strong" one. They're clearly a great team. Such a beautiful family and such a heartbreaking diagnosis for both children.

[@jmk1962]

Fantastic parents. Those children are surrounded by love and attention for their entire lives. I've been there with my son who was diagnosed with a life limiting genetic condition when he was 5 months old knowing we were going to lose him at any time and we lived everyday as if it could be his last. He lived until he was 15 months old and we have very happy memories of his short life where he knew nothing but love.

[@lisalynnmarie2448]

Bless you 🙏🏻

[@bwingbwinggwiyomi]

That's beautiful to know he only truly knew love and was untarnished by trauma. He deserved that at least.

[@cherrymetha3185]

❤❤️

[@DefiantAngel87]

I'm so deeply sorry

[@christinablair1978]

Dad seemed so happy to see someone reading to and interacting with his little guy. They are strong parents and I pray that they hold their relationship close if/when the kids start to lose their battle. I can't imagine having to go through that loss twice and I hope that they fight to stay together.

[@lauranorwar]

Roman was totally listening to the book…and heck yeah! He did say I love you!! Stella was absolutely using her eyes to connect with Chris. It was beautiful!

[@svetis3712]

Можно пожелать только сил и душевной стойкости. Очень печально всё это😢 Дети должны радоваться жизни, бегать, скакать, играть....

[@amyniemann9564]

My heart breaks for this family. Dad shows the pain on his face. It’s so sad, im so sorry

[@dk237]

Roman has so much awareness… he was obviously taking in and enjoying the story when Chris was reading to him. It was amazing watching him tell his mother he loves her. Stella and Roman are absolutely beautiful. ❤

[@balaam_7087]

That S tier parenting makes all the difference in the world to these two little champs.

[@lindalloyd8296]

Roman saying I love you just did me in. What precious children and wonderful loving parents, in the face of this devastating disease. Praying for treatments and a cure ❤

[@alyssam8550]

Me too, that part is incredibly sweet and incredibly sad... I hope for the best for this beautiful family... However that looks for them. 💜

[@bryanmiller476]

If praying actually worked then god would actually be real but also kids wouldnt be born like this in the first place

[@avroe1]

The cure is: don’t have more kids when you are both carriers of a mutation

[@alyssam8550]

@@avroe1 watch the video before being a jerk. They didn't know yet. That's incredibly insensitive.

[@batacumba]

@@alyssam8550 they can literally test for this with genetic testing of the parents. That’s why you’re supposed to do that before you have kids with someone. But many people think you should treat procreation like throwing caution to the wind and hoping for the best. Which is a cute sentiment but not one rooted in reality.

[@Waxxumus]

I could feel the pain in your voice as you read the book. I wept. Thank you for being such a wonderful person to these children. You brought light into their lives, if only for a day. That means something.

[@hedamanz]

Little Roman really enjoyed that story! And Stella really tried to connect. God bless this family 🙏

[@Bryn_G_Mama_of_3]

Mom & Dad: I just want to say how incredible you both are. I cannot fathom how you are feeling, how hard this is for you, and my heart is going out to you both. I just want to hug y’all! Your babies are so incredibly lucky to have you as their amazing parents who truly love, care and cherish them. Thank you for sharing your sweet, adorable littles with us. I pray a cure is found asap and that you all live a long, healthy and happy life together 💝

[@JayJay32186]

I relate to the mixed feelings of watching a cousin meet a milestone while your child is not. ❤ My daughter is autistic and her cousin is 4 months older. When he started talking, I knew in my heart she was not going to hit that milestone at that time. I didn’t know if she ever would. It was excruciating and I felt like it was something I just couldn’t say out loud. I’m so glad this family is close enough to be able to talk about it. What a blessing.

[@muslimah42]

I get it. My son is four and autistic and I relate to this so much . Bless you and your beautiful daughter

[@0tterMom]

These parents are so strong. They are amazing. I can't imagine being in their shoes, the emotions just overwhelm me. I wish we had a cure from this awful disease for these kids.

[@spiritualbutrfly]

Mom is rock solid. Her strength shows through her ability to lovingly describe her beautiful children. Prayers for this family. May the be blessed with strength, peace and joy. ❤

[@aileentrew3526]

What absolutely amazing parents, so very loving. Their beautiful children are a credit to them both. Heartbreaking and uplifting to see such love and acceptance. Hugs and love to you all x

[@Limagoat71]

Roman was really checking you out when you were reading to him! You could see him refocus his gaze to you repeatedly.

[@sharonowen]

My Dad had early onset dementia and it broke my heart it started when he was around 60 years old and he died at 72 . These parents are the strongest people ever so devastating for them to have such beautiful babies to slowly lose them to this horrible disease. God bless them all. You are both amazing parents.

[@RobJDoran]

I don’t think I’ve ever been so upset watching a video. My heart is with this family. My parents both died from Alzheimer’s in their 80’s, but seeing children with this type of disease literally breaks my heart. NO child should ever have to go through this. God Bless you all. I shall pray there will be a cure for this horrible condition and that their love will endure. ❤ 🙏

[@NeeNee_B.]

The 2nd child DIDNT have to go thru it, they CHOSE to have her even knowing what they would be putting her thru

[@RobJDoran]

@@NeeNee_B. and you judge them because?

[@NeeNee_B.]

@@RobJDoran I just told you why. Because they sentenced their 2nd child to a life of pain and early demise. Since when DONT we judge ppl that knowingly and willingly hurt kids?

[@RobJDoran]

@ Wow, you’re really something to judge people by just watching a story about them. I don’t judge people… I let God do that. No wonder our world is in the shape it is.

[@NeeNee_B.]

@RobJDoran what are you talking about, we judge all the time. As Christians, we judge people who we deem to not be living by the Lords word. Even the Bible says to be not unevenly yoked. Judgement is not always a bad thing, sometimes it's a discernment about what's right and wrong. Who doesn't agree that hurting children is terrible? We judge people for that all the time and send them to jail. We literally have people in power called JUDGES. Why are they the exception to the rule? They said out their own mouths it's a painful and terminal disease. Well if you felt that way, why'd you doom a second innocent life to that fate? I'm looking sideways at people that ARENT judging them at this point!

[@steph1275]

I feel for these parents. I can feel there pain and I’m sorry you have to go through this. The pain of losing a child is unbearable. My son lost his battle with severe depression on 8/30/24. I’m in tremendous pain. I miss him so much. RIP Michael ❤ Forever 25

[@vanny-b]

I'm a freshman in high school and just finished biology. I learned all about Punnett squares and genetic mutations, but seeing this video has made me realize that it isn't just something they teach in school. Watching this video made me realize and learn new things. These little kids look so precious and I'm glad they have such amazing parents.

[@pripri3404]

I can almost physically feel the love in this family.

[@eggbun1856]

the home video of little baby Roman laughing while his dad tickles/plays with him contrasted with present day Roman is sobering. these two parents are incredible, I can't imagine how much strength and grit it takes to manage just regular daily life, parenting/any medical stuff the kids need, PLUS the grief that they probably experience every day. surely it's overwhelming sometimes. I hope they have every possible resource they could ever need, and tons of support. I'm kind of left without many words on this one... I'm just glad Roman and Stella have such fantastic parents who are wholly devoted to them and their care and happiness, and I hope the parents prioritize themselves, their mental health, and their marriage too. I think it's probably difficult to keep balance. I wish this whole family so much love and peace. 🤍

[@annafrancessmith]

Honestly. These parents are absolute diamonds. The love is oozing out of them and it’s so lovely to see 🧡

[@chrisweaving5307]

I’m week 3 into medical school and I’m here weeping at this situation. I very much see a calling to trying to help children experiencing all sorts of cognitive decline and/or learning disability. Those small ‘I love you’ moments would make all the hard work worth it.

[@sofiakokoli7024]

You do a great job with your videos, showing us the mental strength all these parents have . Congratulations to the way they face, both their children's condition, but also their niece's progress. Wish them the best.

[@1tommyday]

This is soul crushing. These parents are super heroes

[@sandyfeet8175]

“I love you” and you can tell there is so much love in this family.

[@LyingInAGreenBed]

Dear Jill and Donald, Stella and Roman, you are a beautiful family. Your emotional intelligence, intuition and love shines through every word and every glance. I enjoyed seeing Stella and Roman communicate with their eyes. They clearly still have a lot to say and know you parents are listening. I wish you as many beautiful moments together as possible. I might be overstepping here, but I feel like Roman and Stella are grateful for the way you fill their lives with life and love. I know I would be if I were them. So thank you. Sending love from across the pond to your entire family xx

[@dreamwishergirl]

What amazing parents. I am so sorry this happened to both of your children. Praying for you guys.

[@lanigouws3525]

He 100% expressed "I love you" the best way he could. What amazing parents they have.

[@lisaac4898]

This couple is so strong....Lord do a miracle for them please....😢

[@elzelinakriek-breet3092]

Why didn't he do a miracle when they were in the womb? Because he doesn't exist!

[@pseudomonasaeruginosa4104]

"Lord" did this to them in the first place.

[@elzelinakriek-breet3092]

Your lord was not there to avoid it, was he now?! So useless!

[@AnnMary-b2e]

Es que tienen que sufrir tan niños así como su familia, no creo que sean personas malas y que se merecen tanto dolor, donde está ese ser supremo😢fuerza padres, es cierto que al padre se le nota más el dolor pero uno de ellos tenía que ser el más fuerte y no demuestra su dolor interno, son sus niños y darían su vida por verlos cada día mejor. No pierdan la fuerza y sigan dándoles ese AMOR TAN GRANDE que eso se siente y RECONFORTA❤

[@lindakynokephalos7827]

Mitacles do not happen unfortunately.God did not prevent these kids have such a horrible disease. God only helps to special, chosen people, not to normal ones.

[@tobydandelion]

Thank you for making a point to mention that they still feel joy. A profoundly disabled life can still be a wonderful, beautiful life, as long as there's love. These kids are luckier than a lot of abled kids, honestly. I've never seen parents more devoted to their kids' happiness than this. Beautiful. ❤

[@AndMar87]

So sweet. These children are so precious. They are very fortunate to have the parents that they do 🙏🏿💜

[@JenniferChastain-uz5lg]

I don’t know if you guys read this but I am amazed by your beauty and selflessness as parents. This is what true love looks like. May god give you peace and richly bless you. Praying now for your beautiful family

[@vanessaneira1113]

Wow I am amazed how the parents follow each child cues and take time to enjoy. There is so much graze in this family. ❤

[@Peggy-Sue]

Beautiful children, beautiful parents. You can tell there is so much love in the family, despite the challenges.

[@jenerhart7025]

TBH Chris, I miss the captioning where you describe how you perceive the communication of nonverbal friends. I feel like that is such an important part of teaching the viewer. They both have outlived their life expectancy, which speaks to their strength and to the strength of their parents. What a wonderful, heartbreaking story. I can't imagine what it must be like to have that corner of the mind where you're just...waiting.

[@SpecialBooksbySpecialKids]

Thanks for the feedback. I will continue adding embedded captions for those parts as well as utilizing KZbin's captioning interface for the rest. 👍

[@Juneebug18]

​@SpecialBooksbySpecialKids for me it was the color and the way YOU capped their stories. I understand why you now rely on the platform but it was truly a different experience.

[@MJLover100]

Yeah I do miss where it was in Orange ans White. I loved that

[@lovingmayberry307]

Chris has enough on his plate, I'm happy he's letting YT do the captioning for him!

[@viy2959]

@@SpecialBooksbySpecialKidsyeah. I love that too. And that seems like a really good compromise.

[@deniselancaster6888]

Could you please follow thse beautiful children Chris. Very brave of the parents to enable their children to be involved in research, knowing there aren't any cures yet, but postively hopeful in lenghtening their days and at the same time help others living with this disease. What a couple, what a fsmily! Thank you Chris.

[@AiméeGoodman-u4x]

They literally have nothing to lose. It's better to try anything than to just sit there and nothing

[@heathercommonsense377]

I'm praying for this beautiful family & their marriage. Their kiddos have sweet souls. Also praying that they can expand their family further without new grief, just joy.

[@lovebug.0_0]

it was extremely difficult to look at the mom and dad’s face…the pain in their eyes is just so overwhelmingly devastating…sending so much love to this gorgeous family 💔

[@mamamia-vh5zf]

These videos are so important Chris! You are showing the beauty and the pain of real life.

[@OllyVish]

I just can feel the pain radiating through their dad he can barely hold himself, it is totally destroying him, it makes me feel so sad as a parent myself, it’s so heartbreaking 💔

[@shannonkilner3191]

This video shook me to my core….I have 2 boys under 4 and can’t even imagine. You are AMAZING parents and your children are so lucky to have you ❤

[@ClaudiaHernandez-lm5bj]

Una patología poco común a tan corta edad ... 🥺 Dios continúe iluminando como padres y matrimonio su diario caminar para continuar a cada momento al lado de esos dos pequeños *Román y Stella* quienes en su momento iluminaron sus vidas con esas bellas sonrisas ... 🥹 Literal sin más palabras les envío un afectuoso abrazo y Bendiciones por la Fé, Fortaleza y Aceptación con la que permanecen unidos ... Culiacán, Sinaloa ... 🇲🇽 🙏🏻 ❤️ ✨ ❤️ 🙏🏻

[@teresarichmond5679]

These parents are remarkable. The love, caring and devotion they have for their babies is so wonderful. I broke down when Roman told his mommy "I love you" and when Dad started tearing up near the end. Many prayers for this beautiful family. Thank you Chris for bringing them into our lives. You are a true gift from God to the many families you have interviewed.

[@sahraJ215]

Love hearing how proud they are of their children. Hearing that they both stay strong at the doctor's really is something. I can only imagine the hospital sucks for everyone no matter their cognitive ability, no matter the result, it's not a fun place to go.

[@ilovefish9458]

I have a family member with Alzheimer’s/dementia… it’s so hard! With that being said she had a life and a family. These children won’t get that and it shreds my heart in half. I have no words I wish the family nothing but the best! Just heart breaking

[@jillv4006]

The poor kids seem like they’re struggling so hard to breathe. So very sad. But you can tell that Stella is really trying to engage.

[@evangelinereid3853]

yes, definitely he has breathing issues

[@user-ic4yr6hq5j]

There was a woman on TikTok with two children who had the same disease. She had to suction their airways and they both required oxygen most of the day.. they were a few years older than these two so I’m sure this is in their future also. 😢 Both of those kids ended up passing away within a year of each other.

[@kathybrem880]

She’s not as far gone as her brother

[@flannerymonaghan-morris4825]

@@user-ic4yr6hq5joh no…that’s horrible. Will we see the same thing happening with little Roman? I hope not, but my gut feeling is that it will happen.

[@CAJUNBEE]

I love that the comments are on! I have a special needs non verbal adult. I hard for us the normal we miss what out children could be! And we are thankful for what we have. 😊 I am glad you have family support! 😊