Face to Face with Rett Syndrome

[ninalina86]

she is very beautiful and lucky to have all the confort and equipment that helps her. my girl has 2,4 years and also has Rett. here in Romania are a few girls with Rett, and at Tv never heard about this syndrome. be strong, and film her very much... because i have videos with my girl doing things that now she cannot do. happy hollydais

[tumejoropcion38]

HOLA SOY SANDRA TORRES DE COLOMBIA Y TAMBIÉN TENGO MI HIJA MELISSA DE 15 AÑOS EN ESTE MOMENTO CON SÍNDROME DE RETT, ELLA TIENE GRACIAS A LOS CUIDADOS DE TODOS EN CASA, UNA EXCELENTE CALIDAD DE VIDA Y LO MEJOR DE TODO MUCHO AMOR...ES LO QUE MÁS NECESITAN ESTAS HERMOSAS NIÑAS, ESTOS ÁNGELES QUE DIOS NOS ENVIÓ A CADA UNO DE NOSOTROS.

LES ENVÍO MI AMOR FRATERNO A TODOS DESDE MEDELLÍN COLOMBIA

[slmh18]

She is lovely, and you are lucky to have all those equipment, here where i live people cant afford things like that and have to go to hospitals where the waiting list is so long you have to wait 6 months at least to have rehab.

[nicolemargaret17]

Shes beautiful! i love how her brothers are there for her! such a sweet family.

[haleysphere]

This is a wonderful video. Your daughter is beautiful.

[ilovestickystuff12]

how sweet god bessles u

[ilovestickystuff12]

how sweet

[pamelajahnke]

I was so moved by this video. Thank you for creating it. Thank you for being such a good parent to her.

[bobduponeyranch83]

a old daryou

[smashie77]

thank you so much for sharing your story to the world it gives us just a little insight to what your beautiful girl and family aswell as other girls diagnosed go through.

If it is ok with you im doing a presentation on Rett syndrome for my course(I will soon be a qualified childcare worker)and would really like to show the girls in my class this short clip you have done on Chelsea has touched my heart and I'm sure it wil do the same to them. I look forward to seeing another side of chelsea

[passionfruitprincess]

OMG. What a beautiful girl. I swear if I come into a large amount of money its going to you guys.

[malakoz]

chelsea is so lucky to have such a beautiful and caring family, my daughter also has retts but she is only 4 and still small so it hasnt got really hard yet but i like watching these videos i feel like it gets me mentally ready.

[kmoore702]

I am a special education teacher. I have researched Rett's, because I suspect a child in my class has it.  We have asked the parent have her tested numerous times; however, they never follow through. I watched this video and I just want to say how blessed Chelsea is to have a family like yours. She is precious. Thank you for sharing the video.

[ilieni1]

My sister now its 16 years old and has Rett Syndrom. She was born normal and at 2 years old she forgot slowly, slowly everything that she had learned so far.

She has seizures and spasms. last may she also had spinal surgery and she is much better now. She makes us everyday happy life without her for our family its nothing, she is a very happy girl, smiles, as you said in the video these girls say so much without words. These girls are special.

[velvethome]

My little girl Adeline Rose has Rett's as well, she's 3 now, and watching your video showed what we go through with her now and what our future will look like. Thank you for the video, your daughter is very lucky to have a dedicated mom to look after her, along with her siblings and cousins!

[RogerMooreRulz]

Several years ago my father had an employee who had a daughter with Rett syndrome and I know how things were for the poor girl and her Mother as well. My Father was so affected by this as was I seeing it at a young age. Hopefully some day there will be a cure. God Bless you and your daughter.

[lioralourie2]

I just saw several videos on Youtube about stem cell treatments for Rett's, search for retts reversal and retts before after treatment to find them. I have a daughter with Down syndrome but there are not that many success stories. Rett's there are. The neurons are not damaged and function returns very quickly (see youtube video called Rett Syndrome Reversal Summary)

[lioralourie2]

I just saw several videos on Youtube about stem cell treatments for Rett's, search for retts reversal and retts before after treatment to find them. Furthermore, 3years ago, the condition has been totally reversed in mouse models, but the gene therapy/drug is still far away. But what they discovered is that the nerves are not permanently damaged, they can be quickly restored. Check out stem cell therapy- I have a daughter with Down syndrome so considered it but your condition it's better tx

[Mousegirl913]

Retts Syndrome is part of autism? I never knew that Oo;

[bgroton43]

If your family would like to see Kelly...on the Utube search bar just type: Kelly rett syndrome. Her video is the first to pop up Kelly.WMV. The song you chose to put to your family video is beautiful...we always loved it too. Our prayers are with you and yours. Beth

[bgroton43]

My daughter, Kelly had Rett Syndrome. Her story parallels Chelsea's. The love & pain you feel at the same time is so huge. Kelly was so beautiful just like your Chelsea. They are angels. Kelly passed away 9/14/09 at 16, in my arms as one large tear rolled down her cheek. An old flower pot in my yard that I have not touched in a year has continuously bloomed one purple petunia (her color) since her passing. She is still sending us her love. God bless you and your family, Beth

[FlyDutch61]

Thank you for sharing your story, Beth, and God bless you. Your account of her final tear caused quite a few to flow on our end.

[malakoz]

@bgroton43

i always come to this video just to read your story it always makes me cry. god bless you and your family

[hippyable]

@bgroton43 Oh God! She's there! I'm crying from that video I just saw of little Chelsea. She knew I think. It's sad though. I am so sorry to hear about your daughter.

[canadiangirl10]

@bgroton43 what a wonderful story thank you for sharing Chelsea's a very pretty little girl who is surronded by a a very loving family. Thank you for her story god bless jab

[Dawoudkhalifa]

i hope u get better.

[Dawoudkhalifa]

God bless all of u chelsea and her family, it is really difficult to have such ilness, but with love, faith, and support as it appears clearly, life will be easier and simlier. Thanks for sharing ur story that inspires many other families.

[leesa0718]

I noticed on the video it said rett syndrome was under autism spectrum disorder but to my knowledge it is not grouped there. it is still a PDD like the autism spectrum disorders ( Autism disorder, Aspergers, PDD NOS) but not in the spectrum (rather grouped with CDD). Anyway, i just wanted to say that becuase i know sometimes people get the spectrum confused. Either way she is a beautiful girl and she was an adorable baby. good luck to you.. i wish you and chelsea all the best :)

[DonzaDark]

I am a rett mother my self. My daughter Brookelynn will be turning 8 in march. I pray every day they will find a cure or treatment to make my baby girl better.

[phineasandferbrulz]

she is pretty.

[emijams]

She is beautiful.....so lucky to have the family she has. God bless you.

[kdw717]

Very touching story...My sister Shana just 29 and also has Rett syndrome. It is definately a diffcult journey considering the fact that they cant talk to say whats going on. Stay strong and just know that you love her and you will get through it. Although my sister is very dependant on our family we dont mind doing the tasks like feeding showering, changing her diaper etc because I believe that just shows her how her family is there and how much we care for her :) good luck

[poochieel7]

God bless you child and may a cure be found soon ...........rmccollum, chicago

[RettSyndrome1]

she is beautiful i hope there is a cure my best friends sister has rett and she has been strong. I will prey for her and a good cure

Love,

Riley Natalie and Haley Grace

[atrainluvn]

Thank you so much for making and posting this video! My cousin, Jennifer, was diagnosed with Rett Syndrome very young and growing up with her opened my eyes to the wonders she possessed but also the emotional struggles with seizures and physical limitations. She will be 30 this year and I am proud to have her in my life. I wish Chelsea and your family many years to come.

[TheJessanna]

hi I would really like to know what song is that I love it

[FlyDutch61]

First of all, thank all of you for your kind words and support. With RSRF we are on a mission to find a cure and we are hopeful that we will show you a very different video of Chelsea one day!

The artist is Alison Kraus, btw.

[datzfast]

allison kruss

[lkchristensen99]

Hi from a fellow family living with Rett Syndrome. I know my daughter would love to hear more of that music. Who is the artist?

[Mary41576]

What a beautiful girl. You did an amazing job with this video. I am a Special Education Teacher and was very moved by this. Stay strong and keep moving forward.

[2804jesana]

I loved the songs great video a very pretty hair style she has

[19smurray]

I watched your video of your family and Chelsea. I was really moved by your daughter and her disability and your family's support for her. May God bless the researchers in finding a cure.

[JohannaGotTalent41]

How heart breaking I pray for your daughter and your family

[mikikoala]

I know a 22 year old girl with Retts who still has the abiloty to walk and who can feed herslef. She was one of the oldest girls at a Rett's conference she went to and one of the only ones who could still walk. She is amazing and communicates endlessly with her eyes.

[Jaynedoe1956]

She reminded me so much of my Vanessa that I had to post a video response for you to see how much they are alike. Only difference is that Vanessa is always fed by her feeding tube, and is one of the worse cases of scoliosis the doctor told me. I would be lost without her. She is my EVERYTHING. Thanks for sharing your angel with us :-)

[Aarensmom]

what a stunningly beautiful girl!!

[smpt63]

I love your video...my daughter also was diagnosed with rett syndrome

May God bless you with stength and peace...with warmth, Susan

[sdsurf8469]

God bless you and your beautiful daughter

[raecelestek]

she really is beautiful.

good job on he vid..very loving

[MillionKaitis]

wow that is a beautiful video and song....Your daughter is the same age as mine and we both loved this video. I hope this world smartens up and works on reversing disorders like this. My heart goes out to you...

[brooksalexandra]

She is beautiful! My cousin has Retts, and I only hope that one day there is a cure. Until when we pray...

[ricewind27]

She is soo cute. My niece has Rett syndrome. I love your video its very informative for those who dont know about Rett Syndrome.

[lesleyandsarah]

Beautiful little girl. My daughter is undiagnosed but resembles Rett Syndrome. She is 12.

[Crabbygum]

I showed my friend this. He says goodluck, and keep moving foward. -Matt

[rpmracing754]

very upseting i hope you guys the best

The McCoy's