I am Japanese.🇯🇵 I have a skin disease. She is a young girl, but she is doing her best. I don't understand the language, but she is very cute.😀💗 I'm rooting for you from afar.
Someone told me it’s like your whole body is on fire, white hot fire, excruciating. Knowing you have to put yourself through unimaginable agony each day so you can live another day just to do it all over again
Thank you for sharing. My husband has the disorder - he is 67. Our 2 sons have the disorder and 2 children (our grandson and granddaughter) were also born with the disorder. Our doctor had never had any experience of the disorder. A “skin” doctor diagnosed the disorder as follows: bullous (blistering), ichthyosiform (fish skin), erythroderma (skin). There has been little to no research done regarding the disorder. We have learned to cope with it in our own way. It is painful for the sufferers especially when people give their “unsolicited advice “. Take care and God bless .... 🙏😘🇿🇦
I also have this disease and by the age of fifteen my skin has started to recover and the doctors are saying that i will be fully recovered by bt the age of 23 or 24
I can't even imagine the pain the poor baby is in. But she is so strong and happy through it all. May God bless you little one and may you be healed in the name of Jesus. For by His stripes, you will be healed❤️
Letting over 12M cross our borders and paying to house, feed, clothe, medical, cars, phones, and also sending billions for other countries wars, but we can't make it easy to pay for this or any child's care and supplies. Makes me sick knowing our insurance companies would make it so hard for a family to get the help they need financially. We work hard enough, pay our taxes, and our medical insurance premiums. We can and should do much better!!!
Rowan is a sweet little angel with the toughest minded kind of parents! That's got to be such a tough experience to live but her parents I bet do such a good job! I hope the best for your family!
May God bless to heal her and solve her problem forever such a pretty baby doll may God give strength to her parents to overcome the difficulties one day u people will be happy forever
She is utterly beautiful. It is the courage, strength and grace of children like her that keep me wholeheartedly invested in studying rare diseases, and making it my life's work. You don't know how much it means for you to share her story, Thank you!
I'm an aunt to two butterfly children and watching these videos reminds me how serious this disease is because sometimes their personalities make you forget about what they have. All butterflies are beautiful and this disease does not define them. But nonetheless #FuckEB and I hope that in my lifetime, there will be a cure. My heart goes out to all EB parents because you guys are God-sent.
I have had 2 children with this condition and I know exactly what you are going through. I would like to tell you, you are doing absolutely marvelously and I salute you. ❤️
This was 5 years ago. I hope they still read this and the parents probably know this but there is a cream I just read about that contains collagen 7 which is helping heal the wounds.
It’s disappointing to hear mom say it’s the worse day in her life, when Rowan will have everyday be the worst day of her life. She is alive and mostly happy, be gloriously happy mom. You still have her, one of mine is gone. That day was the worst in my life.
Rowan is happy and will always be happy because she has magnificent parents. A very pretty little girl who seems to cope with her illness. Good luck to this family.
I love you, Rowan. ❤ Power on from all the love you are receiving. Dad and mom, I Iove you also.....my Grandkids are in the same situation with their two year old daughter. She's a shining star for sure: personality plus, just like your Rowan. ❤❤❤❤❤❤
A FAMILY FRIEND’S BABY GIRL WAS BORN WITH EB. I BELIEVE IT WAS THE JUNCTIONAL FORM. TURNS OUT THAT BOTH PARENTS CARRY THE MUTATION. BABY GIRL PASSED AWAY ON FEBRUARY 3, 2020. SHE WAS 12 MONTHS OLD. SHE WAS A STRONG FIGHTER. S.I.P. BABY ANAYA ❤️
I believe there is a hope because she has an amazing parents who never give up. I have a kid who has a genetic condition. I believe that all our children deserve better than this.
Ey una princesita hermosa la vida injusta por dios me duele ver estos casos por que tenemos que pasar tantas pruevas en la vida 😔😢 y duele mas ver un anjelito ver sufrir en esta magnitud que terible es est enfermedad ala piel dios mio 🙏no perder la fe un dia alghien savio encontrara la cura Esperanza de verdad. Y que padres tan maravillosos que estan unidos por su nina que fuertes bendiciones saludos soy peruana grasias por compartir su historia 🤗
I pray that they find a cure for this painful condition. O child should have to live in constant pain so just be positive, think positive and pray. You will get your positive result eventually. God bless your daughter.
May they be a cure to this disease. This is horrible, but May this family and other families receive all the help they need with babies with chronic illnesses.
I want to know.. From where did you get this type of bandages. I also want it for my two years old daughter.. One question.. When has she started walking?? My daughter can't..
![I.N "HALLUCINATION" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/n5B5q1Hwt_U/mqdefault.jpg)
The girl is extremely cute and beautiful like a real doll.
@@zahra-_-7428 OMG great😁
Je to chudák 🖤🖤🖤🖤🖤
I am Japanese.🇯🇵
I have a skin disease.
She is a young girl, but she is doing her best.
I don't understand the language, but she is very cute.😀💗
I'm rooting for you from afar.
You are still beautiful even i dont now you
aint afar in Ethiopia?
@lama ahmed Thank you😇💕💕
you’re so sweet 🥺
Rowan has a wonderful Mother and Father! I hope one day there is a cure! Such a sweet little angel.
I was reading this topic and went through this video. This is little girl is so adorable. It broke my heart to see her suffering:(
Hi what do you know about this disease
The little girl is so patient and brave - this must hurt so much to wash the wounds. Mom is doing this so good.
Someone told me it’s like your whole body is on fire, white hot fire, excruciating. Knowing you have to put yourself through unimaginable agony each day so you can live another day just to do it all over again
Rowan has wonderful parents. My thoughts and prayers go out to her and her whole family!
Beautiful little girl! Wish the best for you, Rowan. 💜
such a beautiful angel.
Allah will give her health she is pretty. MashaAllah
@Moon Wolf 1234 It means unique and the only creator who exists
Moon Wolf 1234 it means god to Muslims. They call their god Allah.
@Moon Wolf 1234 in our religion Allah is the only true creator
Masha allah sokran for being amazing
Moon wolf allah is god for Muslims like me
Thank you for sharing. My husband has the disorder - he is 67. Our 2 sons have the disorder and 2 children (our grandson and granddaughter) were also born with the disorder. Our doctor had never had any experience of the disorder. A “skin” doctor diagnosed the disorder as follows: bullous (blistering), ichthyosiform (fish skin), erythroderma (skin). There has been little to no research done regarding the disorder.
We have learned to cope with it in our own way. It is painful for the sufferers especially when people give their “unsolicited advice “.
Take care and God bless .... 🙏😘🇿🇦
I also have this disease and by the age of fifteen my skin has started to recover and the doctors are saying that i will be fully recovered by bt the age of 23 or 24
M happy that at least I got 1 positive news about EB .
That's wonderful.....🥺🥺🥺🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗Love you dear❤️
My son have the same problem
@@bhavagynalakshmi4890 how is ur son condition dear, ?
It can be healed?
God bless these parents! I pray for a cure for this beautiful girl and the parents because I cannot imagine seeing my kids like this.
I can't even imagine the pain the poor baby is in. But she is so strong and happy through it all. May God bless you little one and may you be healed in the name of Jesus. For by His stripes, you will be healed❤️
She is the adorable kid and the valuable kid I've ever had seen
Letting over 12M cross our borders and paying to house, feed, clothe, medical, cars, phones, and also sending billions for other countries wars, but we can't make it easy to pay for this or any child's care and supplies. Makes me sick knowing our insurance companies would make it so hard for a family to get the help they need financially. We work hard enough, pay our taxes, and our medical insurance premiums. We can and should do much better!!!
Rowan is a sweet little angel with the toughest minded kind of parents!
That's got to be such a tough experience to live but her parents I bet do such a good job!
I hope the best for your family!
I see fire in her eyes,a champ...She is truly princess❤️U will overcome this precious....😘
She's so beautiful wow
No child should suffer this. There needs to be more awareness about this.
is there any permanent solution for it
God bless this brave little cutie 💞
Madam why don't you help me..im also a EB patient
What a lovely little lady with her purse! She is so adorable and so sad to have this disease. Keep your chins up.
May God bless to heal her and solve her problem forever such a pretty baby doll may God give strength to her parents to overcome the difficulties one day u people will be happy forever
Rowan seems like a wonderful girl who will grow up to be very smart and even more beautiful and I hope she is an inspiration to others
Prayers for this little girl, her family and all those who suffer from this terrible thing called EB.
She is utterly beautiful. It is the courage, strength and grace of children like her that keep me wholeheartedly invested in studying rare diseases, and making it my life's work. You don't know how much it means for you to share her story, Thank you!
God bless her..
Why do children have to suffer this way.....😢😢
@Annette Elliott I don't know but it's sad 😭
Same question... Why do I and other kids LIVE LIKE THIS!!! I DON'T BELIEVE IN GOD BECAUSE OF IT. IF HE EXISTED WHY DO I HAVE TO SUFFER THIS MUCH
Just bad luck. That’s all there is to it
It's so sad that children have to suffer through this it isn't fair to them
god is a asshole
what a gorgeous child...God bless this precious child, i pray for a cure🙏
Rowan is beautiful and looks just like her mommy. I sincerely hope there is a cure one day so that she doesn't have any more pain. ❤
Aww she is so beautiful, I'm sorry sweetie you are going through this. You are in my prayers.
What a beautiful child! Praying for all of you! God bless you! 🙏🙏🙏
I'm an aunt to two butterfly children and watching these videos reminds me how serious this disease is because sometimes their personalities make you forget about what they have. All butterflies are beautiful and this disease does not define them. But nonetheless #FuckEB and I hope that in my lifetime, there will be a cure. My heart goes out to all EB parents because you guys are God-sent.
Where are you from and. I have EB from childhood
Guys we just started treating a 4 month old with EB using stem cells and exosomes . It’s been 1 month and a half and we are having improvements
She is so beautiful, I’m so sorry, my prayers go out to your family
What a beautiful little princess! She looks so much like her Mommy.
She is beautiful ❤ my daughter is named rowan to. She just turned 3 and has epilepsy autism and GDD. Being mom,nurse and advocate is hard.
I have had 2 children with this condition and I know exactly what you are going through. I would like to tell you, you are doing absolutely marvelously and I salute you. ❤️
Merhaba durumları nasıl şuan benimde yeni doğan bebeğimde var bi tedavisi bulundumu varmı anlatımdan birşwy anlamadım yorumları çeviri yapıp okuyorum
She’s so beautiful! I just pray there will be a cure soon.
this girl extremely so cute, hopefully you are being pretty and kind girl.
This was 5 years ago. I hope they still read this and the parents probably know this but there is a cream I just read about that contains collagen 7 which is helping heal the wounds.
It’s disappointing to hear mom say it’s the worse day in her life, when Rowan will have everyday be the worst day of her life. She is alive and mostly happy, be gloriously happy mom. You still have her, one of mine is gone. That day was the worst in my life.
she is just so sweet
She is adorable 💜
I would love an update on this wonderful family!
Rowan is happy and will always be happy because she has magnificent parents. A very pretty little girl who seems to cope with her illness. Good luck to this family.
Allah pak bless her giver her good health happiness ameen
Oh God she is vry cute little princess... God bless you.... 💝💝
I love you, Rowan. ❤ Power on from all the love you are receiving. Dad and mom, I Iove you also.....my Grandkids are in the same situation with their two year old daughter. She's a shining star for sure: personality plus, just like your Rowan. ❤❤❤❤❤❤
Ma Sha ALLAH so cute doll💖
God bless her, she's a cute angel. God will definitely bless her and she will recover. We will pray for her. More power to your family
Praying for you all. She is beautiful❤️
I remember reading about a bone marrow transplant for this disease.....
Eminmisiniz hocam benim yeni doğan bebeğimde bu hastalıktan var
This is so sad. Why life is so hard. I hope she will get better soon. God bless this cute innocent girl
A FAMILY FRIEND’S BABY GIRL WAS BORN WITH EB. I BELIEVE IT WAS THE JUNCTIONAL FORM. TURNS OUT THAT BOTH PARENTS CARRY THE MUTATION. BABY GIRL PASSED AWAY ON FEBRUARY 3, 2020. SHE WAS 12 MONTHS OLD. SHE WAS A STRONG FIGHTER. S.I.P. BABY ANAYA ❤️
Poor baby so sad she has bad skin this is turture 😢
It hurts my heart, I love you rowan
I believe there is a hope because she has an amazing parents who never give up. I have a kid who has a genetic condition. I believe that all our children deserve better than this.
This baby is so cute I love her so much....❤❤❤❤❤❤❤😘😘😘😘😘😘😘😘😘 from India
This girl is beatiful hope she gets better soon I will pray for her no matter what
Ey una princesita hermosa la vida injusta por dios me duele ver estos casos por que tenemos que pasar tantas pruevas en la vida 😔😢 y duele mas ver un anjelito ver sufrir en esta magnitud que terible es est enfermedad ala piel dios mio 🙏no perder la fe un dia alghien savio encontrara la cura Esperanza de verdad. Y que padres tan maravillosos que estan unidos por su nina que fuertes bendiciones saludos soy peruana grasias por compartir su historia 🤗
She is so cute. God bless her 💕
She is really strong and she seams really happy
The baby is so cute and adorable
Prayers from egypt
God bless this lovely adorable princess.
Awww sweet baby! I love her! Cutie!
What dayshe is starting those
I pray that they find a cure for this painful condition. O child should have to live in constant pain so just be positive, think positive and pray. You will get your positive result eventually. God bless your daughter.
Any updates of that cute girl?
May they be a cure to this disease. This is horrible, but May this family and other families receive all the help they need with babies with chronic illnesses.
She is so beautiful and lucky to have such wonderful parents. I am a Grandmother and know what it’s like to LOVE 💕
How can we reach out to the family?
So adorable child,
How is Rowan now?
Do you have any update for EB???
Bcoz ami also a EB patient from Bangladesh Plz help me plz...😣
Your daughter is cute and I pray for you all keep up the good work
I feel bad hope you feel better baby girl
She is cute.....i pray that you get well soon
How is Rowan now? Do they now about that new idk if its a bone marrow cure?
She is SO pretty. I hope they figure something out for this
I want to know.. From where did you get this type of bandages. I also want it for my two years old daughter..
One question.. When has she started walking?? My daughter can't..
You need to consult a dermetology....dr. diagnos your daugther then give her treatment
You need to consult a dermetology first.then give her treatment...
@@ritikachouhan3529 ok. Thank you for replying..
Beautiful..gorgeous little angel...blessings and love on her....so sweet....💞💞💕💕💌💌
Have u tried Avene a place in France with specjal thermal springs which help children with severe skin conditions???? Find out more!!!!!!!
So sweet little girl ❤️
How is the research goin
You have a very beautiful, angelic face daughter, praying for the cure of your baby girl mam/sit. God bless you all.
She is so cute I hope she has a good life
Mashallah .....she is so beautiful and adorable 🥰.....may Allah bless you dear.......😘😘😘😘😘😘
Sweet little girl!!!💜💜💜
Shes a beautiful child !!
God bless you baby doll.she s so beautiful❤😍😍
She is so soooo beautifulll 😍😍♥️
God Bless this sweet girl
We will pray to God for her health
She looks just like mom ❤️ sweet girl
May god bless u baby doll u r so beautiful n so cute .... darling I wil pray u
DIOS LA AYUDE A SEGUIR MEJORANDO Y A SUS PADRES A AYUDARLA
She is so CUTEE
Why does every kind of kid suffer like this?...😭😭😭
I didn't know what that they are doing everything for her and that makes me happy because she is going through it with you guys
Omg poor girl god bless her please someone help to her shes so beatiful girl! Get well soon little doll♥️🌈
Feel for the child and the parents.God bless them.
Beautiful baby girl. Hope she's doing well. 🙏