I truly hope they hurry and find a cure for your beautiful little girl. I lost my 21-year-old grandson to a terrible cancer that didn't fit any of the treatment protocols so they used him to try and find a new cure. It hurt me so much to know he was terminal but he said if what they were doing to him could keep another child from going through it he was ok. It wasn't ok with me but he was a courageous, sad, scared young man. R.I.P. my best boy, Nicholas L. Bel
Nobody deserves this, life is so cruel. I am hoping for the best. Sending so much strength and love to this family. That poor baby. :( I can’t even imagine.
How terrible; having to choose between hospice or a clinical trial drug. If I were a parent, I would be completely lost. As the mother said, it's not a cure. God bless you and your family and if you aren't religious, I just truly hope your perseverance and determination does lead to cure and the 1st generation of children surviving this awful condition. I'm so sorry this is happening to your beautiful family; it isn't fair.
I couldn’t even imagine knowing my toddler aged child could die any day.... you guys are really strong and brave to deal with this. I hope you can find a cure before it’s too late. Papa Bless!!
@@krystaldaniels7940 there's no way she'd ever make it through a spinal tap awake. I had one done in high-school. First thing they tell you is you can NOT move second thing, this is one of the most painful procedures a person can have. I have a high tolerance for pain. Having 3 kids not even close. You then have to stay laying down for a few days until the hole closes off because your brain hits your skull causing vomiting and an intense headache. There's no way a child would make it without moving
This mother, this family, is heart-achingly heroic. She's done several shows to get word out. I hope other children with this misfortune have parents that are really aware of their child's development and any changes or delays to really be sure to ask questions during well baby checks. Pray for babies with inattentive or abusive parents that would never notice the delays in the first place. Watch what's going on with your community. You owe the children, the future leaders, your attention. God bless this Mom & baby.
If this is glycogen storage disease, that is a very rare genetic disorder. Both parents need to be a carrier for the child to have it and there are many different sub category types. It so sad these children barely live old enough to go to school . I’m not sure how far medicine has gone with treating glycogen storage disease. I just hope these children who are affected get to have at least a somewhat happy life to the end. 🙏😿❤️
La Delicia De Linda it is actually, like Gaucher syndrome, an accumulation of lipids! Glycogen’s storage diseases can also be non fatal when they are only in the liver or muscle, unfortunately with lipids storage disease the nervous sistem is always affected and we haven’t found a cure yet.
Spiral Breeze it is not that easy unfortunately. Unless you know your family has a specific genetic defect that you can look for, you can’t test for every genetic disease under the sun! It would be crazy expensive, it would require months and months, and still you wouldn’t be able to be completely secure because many of these ilnesses have multiple possible defects, and in very few cases we know all of them.
This kid is so sweet! This disease is not fair but I'm glad the kid got some relief from symptoms she was having! The neurological symptoms are the worst in this disease because there's lipid build-up in the brain! Hope she continues to improve on her development!
It's videos like these that make you grateful for just being alive, able-bodied and healthy. That alone is enough to be thankful and happy about in life. Everything else will always fall back into place.
my papaw had Alzheimer's disease for 18 years... I never got to know the *real* him... all I have are memories from my mom, grandma, aunt, and uncle's. he LOVED cars. fixing them, looking at them, painting them. I hope when I get to heaven I can paint a car with him like my mom did when she was my age. love you Papaw 💜💜 #STOPAlzheimers
I have a rare disease and also require spinal injections every other week. I'm given IV pain meds, plus IV lidocaine to prevent my body from having a bad reaction to the trauma of an IV and spinal injection. It. Sucks. For me, it's just part of life now, but I'm 30 and I'm used to this sort of thing. But for this little girl, so sweet and innocent - all she's known is a life of pain and doctors. It's hell for a little one. I'm glad she has such a loving, awesome family behind her.
Oh my goodness what a beautiful baby girl she is very lucky to have good parents such as you! I am so sorry you and your baby girl are going through this!
Not only does she have to deal with all this, but that poor little girl has to get that many spinal taps and that frequently? Wow. For anyone lucky enough to not know, spinal taps are horrendously excruciating. Hopefully the general anesthesia helps a lot but still. Spinal taps are HELL.
As a mother and grandmother having a child suffering from any illness is heartbreaking. As a mother to a chronically Ill child I can understand the drive to get everything you can to help your child live a better easier life. I pray your sweet baby girl will get better with these new medication and a cure to all childhood illness that take away the child's ability to live a full healthy life.
Bless this family! Holy cow, the mom and dad were sooooo strong while talking about this. I would be 😥 crying and sobbing 😭 and stuttering my words...oh they are soooooo strong! I will pray every night for them during my nightly prayers. Oh my Goddess, what a nightmare. 🙏
Aww poor lil Marion. 😢 she is so cute! I am so glad to hear her condition has improved since the treatments, but I pray they find a cure, or an even better drug that completely stops it in its tracks, something, anything to let her and all the other children suffering live!
Shes so cute and its a shame, but this is why i always tell everyone that its not as simple as "trying for a baby till u get one" theres more to it than that and just because the process itself is so simple and "romantic" people overlook everything that can go wrong. Some bets arent meant to be taken because the consequences can affect more than one person and last an indefinite amount of time. If you think something is fishy in your gene pool, dont just hop into a relationship and dream about having a family, save up money and get tested. It can be costly but youll lower any chance of "surprises" that way. -
I think sometimes we have the wrong ideas about genetic testing. This disease is rare, which means that insurance doesn't cover the genetic testing. I'm pretty sure that insurance only covers genetic testing for more common diseases that you know that you have a risk for. Also, this disease is very rare, which means that wasn't showing up in this family, and therefore, there wasn't a reason to need this test. Yes, she's alive and suffering now, but I'm trying to say that nothing could have prevented this.
Not necessarily most cases caused by random mutation, my sister at six died of schinzel giedion syndrome, which happened because of random mutation and there was nothing my parents could have done to stop it. Same with conditions like Down syndrome.
Aaren YASS thats rubbish talk. You can do genetic testing, but it covers only the common diseases not every single rare condition and mutations. Besides your obvious ignorance, its disgusting that you are trying to blame the parents.
Fuck I couldn’t hold back my tears. I really do hope this precious little angel survives. I can’t imagine what her parents and family are going through. I pray they find a cure for this angel and other children to live a healthy long life.
This disease is devastating. This treatment was pioneered by a family who’s children also suffer from this disease. They faced push back at every turn. Thank goodness they got things approved. If they can do it, imagine what qualified researchers would be capable of with enough funding.
Spinal taps are unbelievably painful. I had one in 6th grade and was injected with pain killers before hand, and it still hurt like hell. I was out of school for weeks afterwords due to migraines and vomiting as a side effect of the pain killers.
Why are they calling this "childhood Alzheimer's" when it has nothing to do with Alzheimer's? This little sweetheart has a distinct disease that causes memory loss and other neurological deficits. It's wonderful that she's responded well to the trial medication!
Bless all children everywhere born with disabilities and congenital defects. I ask God to protect an help them. Kids aren't at fault why they suffer I don't know. Us healthy and able bodies don't appreciate what we have. Sometimes it's good to compare in the sense of being completely functional when others can't help it.
There was a GoFund me but it's ended, please don't wait till you see something like this, there are many sick children just like this or parents trying to cope with children that are sick or dying who need help. EDIT they have their own website where you can donate - www.hopeformarian.org/donate
I hope the cure is found. This treatment might also be able to help older patients with beginning Alzheimer's. Thank God for doctors and the amazing discoveries of medical science. Much luck to this precious little girl and her family.
But hopefully this provides hope. Patrick lived to age 16 without any treatment. He was a funny, vibrant, caring, loving guy. We miss him so much but he impacted so many people's lives.
Melanie Barksdale she was worried when she wasn’t holding her head up but I completely agree. Some babies hit milestones later than others. My daughter will be 8 months on Christmas and can just sit up on her own she needs to have pillows behind her because she can’t catch herself. But my brother in law was walking at 7 months. All babies are different ! :)
There's a doctor that wrote a book that's childhood dementia is actually an allergic reaction to gluten which affects the brain because you're allergic to gluten your good bacteria dies off too much and your gut bacteria send signals to the brain to make chemicals and when your brains not making chemicals it causes dementia and Alzheimer's and there was an actual girl who was misdiagnosed with Alzheimer's she was teenager and they got a second opinion and it turned out she was just allergic to gluten and it was affecting her brain and they give her probiotics there's one person this happened to and they took his sister's the b m which is a feces and the doctor transplanted it into her so that she can get healthy Flora back into her gut again cuz you're so depleted that regular probiotics aren't working they used her brother's because it's safer he's less likely to have diseases her body is less likely to reject it cuz it's her relative and it worked it's time for the brain to heal but eventually her Alzheimer's reverse 100% they found that elderly tend to be more likely to be allergic to gluten because went the more older you get the less your gut works on digestion and so they get more sensitive to gluten causes inflammation and also some elderly take way too many pills that the doctor prescribe them because they don't absorb as much nutrients or have heart problems and other problems most of these problems are from eating processed food and they did research that this is what's the majority of what's causing Alzheimer's and Dementia in elderly as well in the early stages they can reverse it before the neurons get destroyed
I have to stop watching this stuff! I have 4 daughters. Ages 11, 6, 5 and 2 and I'm always saying I'm so lucky they were born healthy but apparently that doesn't mean squat. I'm leaving of new and scary illnesses every day that don't show up until they are older or they can get when they are older. Not this video but I'm just watching WAY too much of this stuff and scaring myself! Maybe it's good to know what's out there but sometimes I can't even sleep at night! I'm so sorry for these kids going through stuff like this. I pray for them and their families.
![BLACK BAG - Official Trailer [HD] - Only in Theaters March 14](http://i.ytimg.com/vi/Du0Xp8WX_7I/mqdefault.jpg)
I truely hope she is the first child to push through this disease. She has a wonderful start with 2 beautiful determined loving parents. xx
Leisha F vi GT
Lord please heal this child in Jesus name amen...nope she on the treatment and get better 🙏🙌❤ God bless u mom n dad
1. There's limited treatment, very limited.
2. It's genetic.
3. No cure
I truly hope they hurry and find a cure for your beautiful little girl. I lost my 21-year-old grandson to a terrible cancer that didn't fit any of the treatment protocols so they used him to try and find a new cure. It hurt me so much to know he was terminal but he said if what they were doing to him could keep another child from going through it he was ok. It wasn't ok with me but he was a courageous, sad, scared young man. R.I.P. my best boy, Nicholas L. Bel
Nobody deserves this, life is so cruel. I am hoping for the best. Sending so much strength and love to this family. That poor baby. :( I can’t even imagine.
Kelly Lynn i
To the chick that responded then deleted, thank you for deleting, cause, I meant life. Not the invisible sky daddy. 🙄
@@kellylynn8662 amen
@@kellylynn8662 reddit moment
How terrible; having to choose between hospice or a clinical trial drug. If I were a parent, I would be completely lost. As the mother said, it's not a cure. God bless you and your family and if you aren't religious, I just truly hope your perseverance and determination does lead to cure and the 1st generation of children surviving this awful condition. I'm so sorry this is happening to your beautiful family; it isn't fair.
Praying for this precious child.
tygersnipe rude
so sad. precious child.
Poor baby ☹️ no child deserves to go through any sickness
Leslie Gutierrez kids got Thur cancer and you're complaining about this
Penguin Love this is on the same level cancer
De'Andra Hannsberry
Really isnt.
TheOcelotGirl it really is. She has a higher chance of death than most types of cancer.
Penguin Love she said no kid deserves to have any disease so that includes cancer. And this is still a disease.
I couldn’t even imagine knowing my toddler aged child could die any day.... you guys are really strong and brave to deal with this. I hope you can find a cure before it’s too late. Papa Bless!!
It’s five years later. Is this angle still with us?
Poor baby.Nobody deserves this,I'm sad she has to go through this at such a young age.I want the best for her family and her,stay strong 💖
Poor baby has to get a spinal tap every week 😞i hope a cure is found . ive never heard of it before seeing this
Ajanae Fletcher every other week
At least theyre doing under general anesthesia. Id hate to see her go through itbawake🙁
@@krystaldaniels7940 there's no way she'd ever make it through a spinal tap awake. I had one done in high-school. First thing they tell you is you can NOT move second thing, this is one of the most painful procedures a person can have.
I have a high tolerance for pain. Having 3 kids not even close. You then have to stay laying down for a few days until the hole closes off because your brain hits your skull causing vomiting and an intense headache. There's no way a child would make it without moving
Dude this is fucked up man a baby with this type of disease. Cant imagine what the family is going thru.
I feel horrible for the whole family. This poor little girl is suffering so much and her family has to watch 😭.
Very strong parents. I'm crying while watching this. How incredibly painful into your very soul.
I hate seeing children like this. Breaks my heart in a million pieces smh
She's adorable my prayers go out to her
I applaud your great strength and selflessness to find a cure!!
You and your husband are awesome parents too!!!
💪🙏💕🍀
This mother, this family, is heart-achingly heroic. She's done several shows to get word out. I hope other children with this misfortune have parents that are really aware of their child's development and any changes or delays to really be sure to ask questions during well baby checks. Pray for babies with inattentive or abusive parents that would never notice the delays in the first place. Watch what's going on with your community. You owe the children, the future leaders, your attention. God bless this Mom & baby.
If this is glycogen storage disease, that is a very rare genetic disorder. Both parents need to be a carrier for the child to have it and there are many different sub category types. It so sad these children barely live old enough to go to school . I’m not sure how far medicine has gone with treating glycogen storage disease. I just hope these children who are affected get to have at least a somewhat happy life to the end. 🙏😿❤️
La Delicia De Linda it is actually, like Gaucher syndrome, an accumulation of lipids! Glycogen’s storage diseases can also be non fatal when they are only in the liver or muscle, unfortunately with lipids storage disease the nervous sistem is always affected and we haven’t found a cure yet.
Perhaps more people should have genetic testing done before they have children.
Spiral Breeze it is not that easy unfortunately. Unless you know your family has a specific genetic defect that you can look for, you can’t test for every genetic disease under the sun! It would be crazy expensive, it would require months and months, and still you wouldn’t be able to be completely secure because many of these ilnesses have multiple possible defects, and in very few cases we know all of them.
Spiral Breeze they would have never tested for this anyway because it’s so raren
meggyspencer seems like there are a Lot of diseases affecting the nervous system.
bless her little heart! her family is fighting for her. I hope they can find a cure for asap!
What a beautiful girl. God bless her and her family. I pray she will have an amazing life.
This kid is so sweet! This disease is not fair but I'm glad the kid got some relief from symptoms she was having! The neurological symptoms are the worst in this disease because there's lipid build-up in the brain! Hope she continues to improve on her development!
It's videos like these that make you grateful for just being alive, able-bodied and healthy. That alone is enough to be thankful and happy about in life. Everything else will always fall back into place.
my papaw had Alzheimer's disease for 18 years... I never got to know the *real* him... all I have are memories from my mom, grandma, aunt, and uncle's. he LOVED cars. fixing them, looking at them, painting them. I hope when I get to heaven I can paint a car with him like my mom did when she was my age.
love you Papaw 💜💜
#STOPAlzheimers
I am a Mother and this is so heartbreaking to watch. Prayers for a fast Cure for any child or adult suffering this horrible disease 😢😪❤🙏🙏🙏🙏
So sad. But, the frenetic background music is annoying.
@ThumperOne How?
God i pray for this girl to be cure and family find so peace in their heart..
Poor little soul. God bless her heart and God bless you mom and dad!
I have a rare disease and also require spinal injections every other week. I'm given IV pain meds, plus IV lidocaine to prevent my body from having a bad reaction to the trauma of an IV and spinal injection. It. Sucks. For me, it's just part of life now, but I'm 30 and I'm used to this sort of thing. But for this little girl, so sweet and innocent - all she's known is a life of pain and doctors. It's hell for a little one. I'm glad she has such a loving, awesome family behind her.
My prayers go to this beautiful little girl 😢❤️
Oh my goodness what a beautiful baby girl she is very lucky to have good parents such as you! I am so sorry you and your baby girl are going through this!
This kills me as a parent to a young little girl. Hug your babies extra tight tonight!
Not only does she have to deal with all this, but that poor little girl has to get that many spinal taps and that frequently? Wow. For anyone lucky enough to not know, spinal taps are horrendously excruciating. Hopefully the general anesthesia helps a lot but still. Spinal taps are HELL.
I don't think she will feel it, injection she will feel will be for the general anesthetic
A truly horrific and profoundly sad disease but amplified x 100 when it affects children and young adults. Praying for a cure soon!!
I would NEVER wish this diease on the young or old... =/ My grandma had it and it was so heaetbreaking. It's a evil disease.
Miss Amber how does a child have these tipes of problems. This is a memory thing right. How the hell does this happen . As a 2 year-old forget WHAT.
margaret baranowski it's just not a memory thing. Watch the video
The title is extremely misleading. She does NOT have Alzheimer's disease, she has memory loss due to a disease in her spleen.
My nana dies from it :(
As a mother and grandmother having a child suffering from any illness is heartbreaking. As a mother to a chronically Ill child I can understand the drive to get everything you can to help your child live a better easier life. I pray your sweet baby girl will get better with these new medication and a cure to all childhood illness that take away the child's ability to live a full healthy life.
She’s so beautiful!! I hope things get better for her!
Sweet baby and for sure, great parents!!!!Bless you all!!!!
Bless this family! Holy cow, the mom and dad were sooooo strong while talking about this. I would be 😥 crying and sobbing 😭 and stuttering my words...oh they are soooooo strong! I will pray every night for them during my nightly prayers. Oh my Goddess, what a nightmare. 🙏
I'm sure they have done all of that but right now overtime you adjust to the situation
What a horrible disorder, I hope the time they have with her is wonderful x
This is so so sad. I hope she is the first to survive this horrible disease.
Loads of love and strength to the girl and their family
God Bless her and your family. I hope they find a cure soon, no child should have to suffer and parents should not have to bury their children.
Omg poor baby.
Who the hell didn't like this? These parents are doing the best they can!
I'm seeing my mother face this tragic illness at 69 the idea of seeing your baby go through it I have no idea how someone cope.
God Bless Your family He is our healer
3:18 invasive privicies
Handle by so many hands at such young ages
Stolen of her good times - memories with families snatch away.
Aww poor lil Marion. 😢 she is so cute! I am so glad to hear her condition has improved since the treatments, but I pray they find a cure, or an even better drug that completely stops it in its tracks, something, anything to let her and all the other children suffering live!
i didnt know there was childhood alzheimer's
now im scared
God bless every child with this 🙏.sending you much love 💘
May Spirit heal your child .........
Blessings to this beautiful baby.She will always be your special baby hoping there's a cure found soon.Be strong mom it will be alright bless you🙏🙏🙏🙏🙏
Prayers for this little girl!
Shes so cute and its a shame, but this is why i always tell everyone that its not as simple as "trying for a baby till u get one" theres more to it than that and just because the process itself is so simple and "romantic" people overlook everything that can go wrong. Some bets arent meant to be taken because the consequences can affect more than one person and last an indefinite amount of time. If you think something is fishy in your gene pool, dont just hop into a relationship and dream about having a family, save up money and get tested. It can be costly but youll lower any chance of "surprises" that way. -
I think sometimes we have the wrong ideas about genetic testing. This disease is rare, which means that insurance doesn't cover the genetic testing. I'm pretty sure that insurance only covers genetic testing for more common diseases that you know that you have a risk for. Also, this disease is very rare, which means that wasn't showing up in this family, and therefore, there wasn't a reason to need this test. Yes, she's alive and suffering now, but I'm trying to say that nothing could have prevented this.
Aaren YASS well said!
Not necessarily most cases caused by random mutation, my sister at six died of schinzel giedion syndrome, which happened because of random mutation and there was nothing my parents could have done to stop it. Same with conditions like Down syndrome.
Aaren YASS thats rubbish talk. You can do genetic testing, but it covers only the common diseases not every single rare condition and mutations. Besides your obvious ignorance, its disgusting that you are trying to blame the parents.
@@Katie2595 _y &? %&?
Such a heart braking situation i pray for all of you and hope to god she gets the cure. You are so inspiring ❤❤❤❤
Fuck I couldn’t hold back my tears. I really do hope this precious little angel survives. I can’t imagine what her parents and family are going through. I pray they find a cure for this angel and other children to live a healthy long life.
Awww little one! I hope we find a cure for this stuff ASAP! ❤💚💜
Innocent kids don’t need to go through this,they should be playing with toys and having fun.Not being in a hospital Everyday,we need to find a cure.
God bless her and her family!
Aww bless her.
I hope she gets through it.
Awe god bless Marian and here family!
General anesthetiser every other week that is not good for her brain development
This disease is devastating. This treatment was pioneered by a family who’s children also suffer from this disease. They faced push back at every turn. Thank goodness they got things approved. If they can do it, imagine what qualified researchers would be capable of with enough funding.
Spinal taps are unbelievably painful. I had one in 6th grade and was injected with pain killers before hand, and it still hurt like hell. I was out of school for weeks afterwords due to migraines and vomiting as a side effect of the pain killers.
She is so beautiful 😍 much love to you’re family
Why are they calling this "childhood Alzheimer's" when it has nothing to do with Alzheimer's? This little sweetheart has a distinct disease that causes memory loss and other neurological deficits. It's wonderful that she's responded well to the trial medication!
Ive had a spinal tap - fucking painful as hell. im so glad they put her out.
Sending so many hugs for them
Bless all children everywhere born with disabilities and congenital defects. I ask God to protect an help them. Kids aren't at fault why they suffer I don't know. Us healthy and able bodies don't appreciate what we have. Sometimes it's good to compare in the sense of being completely functional when others can't help it.
Poor baby girl :( keep her in my prayers ❤️
I can not believe a child could have Alzheimer's, what is going on? This is not fair for these poor kids!
Much love and many prayers to this family. Lord Jesus please put your healing hand on this child and your loving arms around this family. Amen.
Get well soon keep fighting 🤛 u can do it
is there like a link to donate to this family and this girl's treatment?
Tori A I don't think so but I will look and see
Medicaid
There was a GoFund me but it's ended, please don't wait till you see something like this, there are many sick children just like this or parents trying to cope with children that are sick or dying who need help. EDIT they have their own website where you can donate - www.hopeformarian.org/donate
Really, I want all people of all nationalities and ages alike to be able to get the treatment they need.
She is a doll
Thank you America.
I hope the cure is found. This treatment might also be able to help older patients with beginning Alzheimer's. Thank God for doctors and the amazing discoveries of medical science. Much luck to this precious little girl and her family.
Does anyone know if she is still alive?
I AM CRYING SO HARD RIGHT NOW
My best friend died from NPC. Prayers for your family.
But hopefully this provides hope. Patrick lived to age 16 without any treatment. He was a funny, vibrant, caring, loving guy. We miss him so much but he impacted so many people's lives.
Wow never knew kids can also be affected
Awww god bless this family😭
Hope she gets better soon!💓🙏🏻
Completly bolling my eyes out
Oh god please please please save this angel ameen
This is devastating
Poor baby, I wish there was something I could do it help
God bless her! Please god cure this baby!
I have a mother who works in the medical field
Not crawling at 6 months isn't concerning the large spleen and liver is. I didn't crawl to like 7 1/2 months on my hands and knees
Melanie Barksdale she was worried when she wasn’t holding her head up but I completely agree. Some babies hit milestones later than others. My daughter will be 8 months on Christmas and can just sit up on her own she needs to have pillows behind her because she can’t catch herself. But my brother in law was walking at 7 months. All babies are different ! :)
My son didn’t roll over until he was seven months old, but he was walking at only ten months old. He did everything at once.
any help for this child?!?! PLEASE! !
There's a doctor that wrote a book that's childhood dementia is actually an allergic reaction to gluten which affects the brain because you're allergic to gluten your good bacteria dies off too much and your gut bacteria send signals to the brain to make chemicals and when your brains not making chemicals it causes dementia and Alzheimer's and there was an actual girl who was misdiagnosed with Alzheimer's she was teenager and they got a second opinion and it turned out she was just allergic to gluten and it was affecting her brain and they give her probiotics there's one person this happened to and they took his sister's the b m which is a feces and the doctor transplanted it into her so that she can get healthy Flora back into her gut again cuz you're so depleted that regular probiotics aren't working they used her brother's because it's safer he's less likely to have diseases her body is less likely to reject it cuz it's her relative and it worked it's time for the brain to heal but eventually her Alzheimer's reverse 100% they found that elderly tend to be more likely to be allergic to gluten because went the more older you get the less your gut works on digestion and so they get more sensitive to gluten causes inflammation and also some elderly take way too many pills that the doctor prescribe them because they don't absorb as much nutrients or have heart problems and other problems most of these problems are from eating processed food and they did research that this is what's the majority of what's causing Alzheimer's and Dementia in elderly as well in the early stages they can reverse it before the neurons get destroyed
This is heart breaking
Poor baby . The spine ouch poor baby that must hurt I say she couldn't walk a bit ouch
She’s adorable ❤️ 🙏
I'm 26 and was diagnosed at 18.
Hope your doing well
A spinal tap every other week 😢 wow. So sad this sweet little girl has to endure this.
I have to stop watching this stuff! I have 4 daughters. Ages 11, 6, 5 and 2 and I'm always saying I'm so lucky they were born healthy but apparently that doesn't mean squat. I'm leaving of new and scary illnesses every day that don't show up until they are older or they can get when they are older. Not this video but I'm just watching WAY too much of this stuff and scaring myself! Maybe it's good to know what's out there but sometimes I can't even sleep at night! I'm so sorry for these kids going through stuff like this. I pray for them and their families.