Thanks for uploading the videos.

I have the same brain malformation as Alessia. It’s important to note that Rhombencephalosynapsis is a spectrum, and a lot of us have coexisting conditions such as Autism and ADHD. We don’t know either what the cause, as you can see while Alessia and Sophia are identical twins and only Alessia has the disorder.

Oh, good! Glad she was able to find the time and energy to write a book! I have it in my cart. xo

I also have hydrocephalus but my last vp shunt broke in 2017 so they performed an operation in my brain to help the spinal fluid go through my stomach. What I am trying to say is that there’s other solutions to prevent having a vp shunt. Vp shunt is a very risky procedure to endure whereas creating a passage in the brain for the spinal fluid is a permanent solution that prevents further issues.

I love these parents! That being said, my heart Goes to her twin. Survivors guilt is real

whole family looks like they need a good vacation 🥺

yeah that raised a red flag for me too. the soda bottle is bubbling up about to burst

I mean, she obviously noticed how her parents felt, even though as a child, she mustn't have understood clearly everything that's going. Not just her sister's struggles, but also her parents', including the brute effects of their depression/ptsd before they were properly diagnosed and started going to therapy. It's easy to absorb all of these feelings to yourself and not talk about it to avoid "troubling" your parents more when they need to take care of your sister. Typical sibling behavior that I've seen it on myself and others. That's why I can relate to this family a lot. Doesn't mean she doesn't love her sister, like Sophia herself said, it's just the situation that's complicated. But her parents are improving, so they'll get better together as a family. I hope Alessia manages to go to school as well

I am really hoping someone steps in and gives her the care she needs. I am deeply concerned about her future and her mental health. I wish it was more appropriate to go more deeply into her negative feelings and to validate her struggles with her sister , but i understand that's a limitation of an interview relying on public consumption. I think she seems very sad she doesn't have an able sister as well. And i know some people gonna think that's horrible, but I'm also disabled and we can't candy coat the truth... It is hard for the people around us, especially siblings. It's often treated like mourning for parents and the siblings aren't allowed their mourning.

Your absolutely right..this family needs help..and medical treatment properly..Kennedy Krieger in Maryland..c what's going on

The dad is also doing a good job. 👍

Very well said.

Yes! Respite care is so important.

Your family is blessed by God in a way most of us are not. It was a beautiful and tearful experience for me to listen to your responses. Though I don’t know your name, I will pray for all of you. God knows what your needs are and He is good all the time. The determination to be positive is evident in the way the other three children have embraced compassion; they will be wonderful adults.

They all said it was hard at times. Also you have to understand that kids sometimes just pick up on what there parents say to themselves and they copy it. It usually isn't the parent making them say it. They just learn everything from there parents. Maybe they just aren't sugar coating there feelings like most people do. You could be right tho,and maybe she's being told to be grateful that she didn't have the same issues, especially sinse it started in the womb with having to share a placenta and only one twin got the nutrients she needed. But I doubt that the parents try to make her feel that way. Maybe they just keep saying they are greatful she turned out ok.

@@Hizwife it's more so that kids going though that don't really want to say they're not doing okay, because the situation is delicate and don't wanna put any more stress on the parents. at least that's what I get from it, having lived a similar thing growing up.

It’s deffo not the same, but I have a sibling that had epilepsy, and it was only after all of it finally ended (surgery) that I realized what I was going through at the time. You are right, it is super isolating to be a sibling of someone with a disability or severe illness. I wish there was more support for us as well. Thankfully I’ve found a few SIBLING support groups on FB that helped.

God bless you Emily. Your experience is a very difficult one. You didn’t say how long ago you were 9 almost 10. You said you were triplets so I am hoping you and your sibling can discuss this together and find comfort together. I have known twins that were separated by death and sometimes the surviving twin is filled with guilt because they survived. Finding peace in this situation is a very personal journey and nothing I say can give it to you. But just so you know I recognize how difficult it is and it doesn’t subtract from your value at all. If you don’t mind I would like to include you and your family in my nightly prayers. God be with you

@@bythegraceofgod993 thank you! My sister will has been gone 17 years in October. I appreciate your prayers as we continue to figure out life without her.

Chris is a modern day saint

hey im a triplet too! one time my sister was missing on a theme park uh i threw a tantrum

It’s so important for other families to see the struggles others are going through.

I don't see how this mom does it... exhausting

yeah i wish they could get more help like i can see it becoming easier once the other siblings get older and mature then they won’t be juggling so much at once

Yes, I really can't see much of how beautiful and sweet she is when I only see a very exhausted and depressed family trying to get by by telling each other how much fun it is to have her. They really need more help or everything will fall to pieces one day.

I agree, this is very sad. I cannot image how difficult it will get when she continues to grow.

I think they're getting as close to describing it as they dare.

Exactly

Really goes to show that congenital disabilities aren't always genetic... I'd love to know what causes them. In the case of this little girl, the mum did say something about a lack of nutrients.

@@quinncreel6091 There can be a parasitic twin, where one takes all the nutrients from the other in the womb. That causes one to be much smaller and disabilities arise from that.

@@angelatully9298 It could also be how the twin was positioned and access to nutrients not necessarily parasitic twin always..

@@angelatully9298 not a parasitic twin..They had the SAME placenta so the nutrients were not distributed properly..

Twin to twin transfusion is also one cause of this, I know twins in this situation where one has cerebral palsy

Did you see the sadness in her eyes while their mom was describing the details of her mono mono pregnancy? I'm very glad for the honesty --very refreshing --but the "just keep her alive" at all costs points to the failure of our medical establishment to know when to quit. Death is not a defeat, but it's the fate we all share. This lovely family bears so much grief it's heartbreaking.

I hope Sophia grows up able to balance caring for others with taking care of herself ♥

She is too young to be put such a responsibility on her shoulders, everyone in that family is doing the best they can. Sophia seems like she needs a vacation with extended family or something like that, it doesn't seem like she has the space to get some proper rest (physical and emotional)

@@CharliieG88 What responsibility? Loving her sister?

@@jacobus57Partially agree

Please consider calling adult protective services yourself, if you think it is needed. People who aren't the one being abused are able to report concerns as well. And take care!!

I agree with your statement about being more honest, stop sugar coating and let those involved be more free to express their feelings. It certainly must be challenging for all involved to raise a child with special needs. These families are truly brave. ❤️

YOU need to call APS.

YES YES YES

Holy moly your story sounds like my husband with his brother. To this day he's never let him meet me or the kids because of his dangerous, jealous nature

Thank God mom has such positive children to help her in Alexia's care

@@jackie4350 It's sad that the children are put in that position in the first place. They need to be kids, not caretakers.

@@michaelvitale7041 How do you think the west was settled and you are afforded the life of convenience that you live & enjoy today?

The girl probably needs to be in a residential care home. I admire this family’s tenacity and I understand that they want to give her as normal of a life as possible, but we humans can only take so much.

Sending you hugs from England 😘

You can keep going Your a great person and things will get better. If you ever need to talk there are people here for you including me.

I assume that she'll be placed in some sort of group home when she's an adult.

For us , Music has been key.

@@maplecosy9429 Yes! In my family too. 5 of my kids have ADHD. My oldest daughter with ADHD is now going to major in Opera. Music was her life line!

Stay strong! You’ve come this far and damn, you’re a trooper for that. I cant imagine how difficult caring for a special needs child is but I wish you all the best

Hello pretty how are you doing, hope you are doing well with your family?

I was going to write something very similar! This little girl really needs to be in school, even if she is in a one-on-one situation. Not only for her, but for her siblings and her parents. 20 minutes a week is not enough for a child to learn new skills. The parents need someone to represent them at an IEP meeting and get this child back in a classroom! It is vital for everybody!

My friend is a special ed teacher. The kids can be really rough. She's come home with bruises and bitemarks. Some days "teaching" is the last thing that happens. This is an extreme case. I feel bad for all of them. Those parents need regular breaks to refresh.

My friend is a special education teacher. Some of those kids can get really rough. She has come home with bruises and bite marks. Sometimes teaching is the last thing that happens. The parents do need regular breaks to refresh. This is an extreme case.

There is no structural support in place to help these teachers. Dealing w sped ed kids are extremely difficult sometimes bc these kids get frustrated easily (not their fault) ans hurt the teachers. You can't just get mad at the teachers without asking "what tools do you need in order to teacher?" This could mean additional staffing or special equipments, which are expensive!!!

There’s nothing the teachers can do until the parents work on behavior modification. She can learn; they just need to get her the right kind of help rather than blaming the school, insisting that’s just who she is, and saying they’ve already tried everything.

I see myself in her also. 😢

Your body did not let your baby down, it was just bad luck. it's a matter of chance, not a matter of your body.

Why exactly are they lucky to have Alessia? I don’t see it this way. Quite the very opposite.

@@nadiafedorova3438 all of her siblings expressed how much they like her and how important is for them to have Alessia in her life. Also, this is not a video for you to express your negativity. If you don't have anything nice to say, just don't say it, because here is not the place for it.

@@AmandaScacabarrozzi yep. I actually agree with the second part of your message. My bad.

She is! Beautiful lady inside and out.