Rowan's Story
ฝัง
- เผยแพร่เมื่อ 26 พ.ย. 2018
- Rowan is a 3-year-old girl living with Recessive Dystrophic Epidermolysis Bullosa, a devastating and life-threatening genetic skin disorder. EBRP funds research aimed at treating and curing Epidermolysis Bullosa.
About EB Research Partnership
ebresearch.org
Founded in 2010 by a group of dedicated parents and Jill and Eddie Vedder of Pearl Jam, EB Research Partnership is the largest 501c3 nonprofit funding research to find a cure for Epidermolysis Bullosa (EB). EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth.
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.
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
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
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
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
I see fire in her eyes,a champ...She is truly princess❤️U will overcome this precious....😘
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❤️
Beautiful little girl! Wish the best for you, Rowan. 💜
such a beautiful angel.
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 .... 🙏😘🇿🇦
Rowan has wonderful parents. My thoughts and prayers go out to her and her whole family!
She's so beautiful wow
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.
God bless this brave little cutie 💞
Madam why don't you help me..im also a EB patient
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?
She is the adorable kid and the valuable kid I've ever had seen
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 beautiful ❤ my daughter is named rowan to. She just turned 3 and has epilepsy autism and GDD. Being mom,nurse and advocate is hard.
She is so cute😻 hope she get fine soon ✌🏻
You cant......she was born with it life expectancy is 12-14
There is no treatment yet
@@Aztive n...no. it's 30 i believe... Cuz... I'm still alive.
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
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
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 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. ❤❤❤❤❤❤
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
what a gorgeous child...God bless this precious child, i pray for a cure🙏
God bless her..
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 🤗
this girl extremely so cute, hopefully you are being pretty and kind girl.
She’s so beautiful ❤️❤️❤️🥺💋
What a beautiful little princess! She looks so much like her Mommy.
Poor baby so sad she has bad skin this is turture 😢
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. ❤
She is so CUTEE
Why does every kind of kid suffer like this?...😭😭😭
What a beautiful child! Praying for all of you! God bless you! 🙏🙏🙏
She’s so beautiful! I just pray there will be a cure soon.
What a lovely little lady with her purse! She is so adorable and so sad to have this disease. Keep your chins up.
Aww she is so beautiful, I'm sorry sweetie you are going through this. You are in my prayers.
she is just so sweet
Beautiful..gorgeous little angel...blessings and love on her....so sweet....💞💞💕💕💌💌
She is so beautiful, I’m so sorry, my prayers go out to your family
This baby is so cute I love her so much....❤❤❤❤❤❤❤😘😘😘😘😘😘😘😘😘 from India
I love you rowan💖💖💖💖💖
Prayers for this little girl, her family and all those who suffer from this terrible thing called EB.
Praying for you all. She is beautiful❤️
She is so soooo beautifulll 😍😍♥️
God bless this lovely adorable princess.
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!
May Allah shine her life with joy, success, prosperity and everlasting happiness..such
sweetheart lovely cutie❤
It hurts my heart, I love you rowan
She is adorable 💜
She is so cute. God bless her 💕
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
I feel bad hope you feel better baby girl
May god bless u baby doll u r so beautiful n so cute .... darling I wil pray u
So sweet little girl ❤️
Omg poor girl god bless her please someone help to her shes so beatiful girl! Get well soon little doll♥️🌈
Такая красивая малышка.Такая маленькая и столько боли. Выздоравливай, Rowan!
She looks just like mom ❤️ sweet girl
Sweet little girl!!!💜💜💜
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
We will pray to God for her health
She is so beautiful and lucky to have such wonderful parents. I am a Grandmother and know what it’s like to LOVE 💕
You have a very beautiful, angelic face daughter, praying for the cure of your baby girl mam/sit. God bless you all.
Hoping she's ok just clicked on to the channel she's beautiful god bless ❤
And poor little girl i hope you will get well soon
God Bless this sweet girl
Oh God she is vry cute little princess... God bless you.... 💝💝
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.
So adorable child,
Shes so beautiful..god wl heal you my dear..
Breaks my heart to see this
Feel for the child and the parents.God bless them.
This little angel is extremely beautiful GOD WILL HEAL YOU SOON.💕💞
She beautiful! You guys are so brave! 👏👏👏
This is so sad. Why life is so hard. I hope she will get better soon. God bless this cute innocent girl
Ma Sha ALLAH so cute doll💖
Wow, she’s beautiful! 😇💙
Beautiful .God Bless U
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
Awh poor baby girl,l pray she gets a 100% better this is truly heartbreaking.🌸🧸🌸Shes. Really beautiful 🌸🧸🌸
This girl is beatiful hope she gets better soon I will pray for her no matter what
She is so beautiful.
Beautiful and appreciate to her parents
Sending you God healing.
She is really strong and she seams really happy
Awww sweet baby! I love her! Cutie!
The baby is so cute and adorable
Prayers from egypt
It's really a pain full ,, but the baby is so cute , any way God will give a bright future in her life in another way ,, wait those days will be soon to her
The baby Rowan is so cute like a fairy or s cute dog may god bless her because she is very ... I am speechless but she is very very beautiful ❤️. Means really really god plss bless her 😌😌😌😌💓💓💖💖💖💝💝💝💖💖💖💓💓💓💝💝💝💕💕💕💌💌💌♥️♥️♥️💜💜💜💜💙💙💜💜💚💚💛😌🧡🧡💛💛❤️❤️
Beautiful baby girl. Hope she's doing well. 🙏
Baby, baby, baby, oh baby, I send you so much love today and to your family as well. If I could give you my skin I would. But I'm old and you need young skin, so I'm sending the family love for their baby girl.
Blessings and prayers for that princess
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.
She is best mother and father.♥️♥️♥️
Triste triste triste que uma criança sofra com uma doença assim dia é noite queima coça e dói muito quando tira as ataduras
..POBRE CRIANÇA!!
She is cute.....i pray that you get well soon
Mashallah .....she is so beautiful and adorable 🥰.....may Allah bless you dear.......😘😘😘😘😘😘