Sierra's battle with Rett Syndrome

[MatKentz]

I have a daughter who was diagnosed having rett syndrome when she was 4 yrs old but now she is 21 years old she can walk but she can't do simple thing feeding to herself,she still on diapers ,she loves to watch barneys ,she is a lovely daughter.She has stop schooling cause of her age.She been attending special needs school till she 18 years old.Now I been thinking about her if I'm not around anymore........

[tychi87]

i am studying this in school now and i came across your vid cause i wanted to see how the syndrome really is and not just read about it...You are very brave and strong for doing this and may God continue to bless you and your family especially Sierra....it's been a few years now since this vid...if you don't mind me asking...how is she now?

[laineyful]

@tychi87 Thanks so much for your comments, and nice to know they are teaching about this in school! Sierra is doing great, progressing well and mostly healthy. We have high hopes that a cure is near. Thanks for asking :)

[Sheri451]

Maria had been taken to numerous doctors and has been given numerous meds to control the seizures. She is very tiny for her age, I've saw pictures of her. She is very pretty like your daughter, but looks about nine years old.

[Sheri451]

I take care of a little girl who's Mother is an in home care nurse, She and three others take care of a 15-year old named Maria with Rett, this child has had 18 seizures since last May. She can neither walk not talk.They try to take ger to school a few times a week, but when she arrives they give her babies work to do, it frustrates her and if they don't take her home, she will get so upset she'll have a seizure. They can't turn on the television or play music because it gets her upset.

[laineyful]

@Sheri451 Sheri, I had the same problem with Sierra's last school district. They thought she was cognitively only 9 months. In fact she is quite smart, smarter than her age, can read and do other age appropriate skills. I had to pull her out and homeschool her because she would just shut down at school. Treating a child with normal intelligence like an infant is abuse in my opinion. Sierra was very depressed at school. No signs of that now.

[Sheri451]

@laineyful I don't know if Maria's parents can do that. But the woman, who's little girl I care for used to teach at the school Maria goes to now. I think they have to pass a test in my state North Carolina, before they can homeschool a child.

[gloriass777]

Your poor baby. She is beautiful. She truly is an angel. <3 All my blessings go to her.

Are the doctors doing anything to reverse the symptoms?

[gloriass777]

Does anyone know why Rett Syndrome only targets girls?

[laineyful]

@gloriass777 It does not only target girls, it affects boys also just that it is mostly fatal in boys. Most die b4 birth or first year and parents never know they died of Rett. Its fatal in boys because girls have the extra x chromosone to keep them alive. I know there are at least 5 boys who are living though, some because they have an extra x chromosone.

[Filiparamalho]

togeather we can beat this

[Filiparamalho]

they made a brake through, see for your self

[Filiparamalho]

send it to all your friends and family, we need your votes.... the key word for the word is Reverse

[Filiparamalho]

please go to youtube and put in search vivint rett syndrom and vote we are so close to a cure.

[laineyful]

Thank you! Sierra had bad ear infections too, and seizures from them. She had ear tubes put in about 5 months ago and no problems since. I would recommend it highly. Our girls arent able to show fully how much pain they're in...I guarantee its worse than it looks. Best of luck to you and your sis!

[iluvjacobblack100]

Sierra is just plain beautiful. My little sister has Rett syndrome and it has changed my life. She is only 2, but she wrings her hands, bites. She is now having BAD ear infections and getting to a point where she is having a hard time eating. We are going to keep trying for a cure! I wish the best of luck to you and your family with Sierra! God Bless!

[mazelaris]

she is so beautiful!!

[laineyful]

@janineaaaaaaa Its genetic. Diabetes is thought to be genetic, thats why Drs ask for family history of it since it runs in families. Similar to how some cancers are genetic also. A cure for RTT would be a reversal of symptoms, and Rett geneticists believe that is possible since they were able to do that in mice and make them completely normal. No, you can't "cure" the genetic mutation itself, that would always be there, but its very possible to cure the devastating symptoms of Rett Syndrome.

[janineaaaaaaa]

@laineyful What an insidious disease. All the poisons of technology is catching up to our children. Toxins and chemicals everywhere affecting the DNA of our cells. Truely a tragedy. God Bless.

[Mattydaddy1985]

@janineaaaaaaa Proof? I have a daughter with Rett and haven't found any support to the idea that technology is the cause. Please dont inject some personal opinion as fact.

[333pinkitty]

Im glad shes improving. Shes a lucky girl to have such loving parents and of course you know how blessed you are to have such a precious gift. 

[LiTtLeBiBiStAr]

parents always know when somthing's wrong with their kids...I hope she gets better, she is so beautiful!

[laineyful]

@LiTtLeBiBiStAr Thank you! Your right, parents always know, too bad Drs. don't listen more to us.

[mzsassiness]

Hi, I first wanted to say how beautiful your daughter is! She is absolutely precious. I also want to ask some questions about her experience with Rett. I suspect that my daughter may have Rett. Her neurologist made the suggestion and so has an acquaintance who happens to be a RN. I was just wondering at about what age did Sierra begin losing her abilities? The only regression that I am noticing in my daughter is her ability to chew and swallow. Any advice is most appreciated.

[laineyful]

@mzsassiness Hi..thanks, I think she is quite beautiful myself :) Actually we were not even aware she regressed until we looked back. There were some things she did once or twice that we never saw again. But I would say when her hand movements started at about 15 months was when things stalled and started regressing. Its the hand movements that set apart kids with Rett from all the other disorders. Does she have any? Sierra is a hand mouther.

[nursetrix]

my grand daughter is the same oh my the simularities. she was just diagnosed with rett syndrome. she is 2. what a beautiful girl you have!

[laineyful]

@nursetrix Thank you :) I can report that Sierra is doing well and cognitively at age level. There is a lot of hope for a cure, and the belief is it will happen within 10 years. Let me know if I can help answer any questions you have about your granddaughter and Rett. Best of luck!

[marydee69]

That's my plan. We have been referred to a genetic specialist, once again. Now I am going with ammunition. Thanks for all the help.

[marydee69]

We just got the call and the blood test shows to be negative. I am in total shock and denial at the same time. I know there is a difference in Clinical diagnosis and genetic diagnosis and I am just going to wait this out. There has to be an answer and someday, even if it when I ask the Lord, I will know. God Bless little Sierra and God Bless you.

(see my story below)

[laineyful]

@marydee69 I think the percentage is about 25 that are diagnosed with Rett with a clinical diagnosis. You have to remember that the first blood test came out I think in 1990. The science is still pretty new and they are still trying to find the faulty gene in the other 25%. The girls/boys that fall into the clinical diagnosis have all the symptoms. So don't think a negative test means she doesn't have Rett! Have her Dr. go through the clinical criteria. If she meets it, then she has rett.

[26sajdah]

@laineyful this is the first little girl that REALLY reminds me of my own. my daughter was diagnosed last year with rett syndrome and its definately been hard especially since i have 4 kids and shes my only girl. she is so sweet and loves to smile. sometimes i think shes more happy than i am lol well good luck and show her nothing but love and the best that u can. im gonna put a video up soon of my daughter amyah!

[laineyful]

@26sajdah Hello...thanks for your response and for watching Sierra's video. I know its a difficult journey for us parents but the payoff we receive from these girls is worth every struggle. You obviously have a lot more on your plate with 4 though! I look forward to seeing your video of Amyah :)

[lb1788]

I just found out about Rett after watching a segment this past week featured on "The View." I was so interested that I went straight to the internet to find out more. After reading up on Rett I was so happy to find your story and beautiful Sierra. I can't imagine how frustrating it must be for you and all of Sierra's loved ones.  It hurts inside my heart when I think about how your precious girl can not express herself. Even on my best day I do not believe I am as strong as you.

[laineyful]

@lb1788 I'm so glad the View's segment has been raising awareness and inspired you to watch Sierra's video. The family profiled on the View is just starting out their journey. They will go through many more ups and downs. Yes, having a child with Rett does make you stronger. Sierra has been such a blessing to us and she is perfect to us how she is. Thank you for your kind words and please spread the word about Rett Syndrome. We know our cure will come but it starts with bringing awareness!

[marydee69]

Thank you for your story. My daughter is 21 and we are just now being tested for Rett. I had no idea about this and amazingly no one has ever tested her for it. She had ALL the symptoms now. We are anxious about knowing for sure. We have always been labeled with CP but yet didn't fit. Thanks again and I will pray for you. This is a long road but with God you will make it through. Sierra is absolutely gorgeous!!!

[laineyful]

@marydee69 Its sad that it took so long for your daughter to get tested! I have heard that story all too often. Usually diagnosed with either cp or autism and not tested for Rett. Sierra was not tested until 2 1/2. She was seeing a lot of Drs. from 12 months on and it was me who figured it out. Thankfully it seems awareness has gotten better in the last few years and Drs. know what to look for. Please send a message if your daughter is positive for Rett. Thanks for your post :)

[maggagi3]

Sierra looks like a bundle of joy, she is so beautiful, my thoughts and prayers are with her, I hope they find a cure for rett syndrome and when they do I hope they don't make it difficult to make it available to everyone. :] God bless your family <3

[laineyful]

@maggagi3 Thank you :)

[laineyful]

Thank you :)

[hundredsand]

Sierra is so pretty.

[JessicaLynn159]

I have been working with any type of disabled children at my high school for 2 yrs now. It is a blessing to walk into their class room having the worst day and their smiles, hug, and laughter cant help but wash every worry away. They have taught me more than any class i have taken. I have fallen in love with every student. God bless you, she is adorable.

[laineyful]

@JessicaLynn159

Jessica- It takes a very special person to recognize what a blessing these kids are. Sierra brightens every day and I am truly lucky to be chosen to be her mom. Thank you for your kind words!

[ynava318]

She is absolutely beautiful! As a single mother of a 6 year old who is blind and significantly developmentally delayed I can surely feel your pain. I was 20 years old when I had her and it rocked my world. But the way I figure it is that God must have really thought I was someone special to bless me with such a wonderful gift of a daughter! Enjoy each smile, celebrate each small victory and keep your head up to the sky! God bless Sierra and her family!!

[bmylady2008]

So adorable child, don't lose hope!!

[WamieSamie]

nawww she's adorable! <3

[Rivenga]

she is such a cutie how she now

[tintinyum]

She is very beautiful.......god bless.

[laineyful]

@tintinyum

Thank you :)

[jesus7es7dios7]

@tintinyum Jesus can make everything normal.... He can fix anything.... If human love does miracles... can you imagine the love of God? How much more can it restore... May God bless Sierra and her family in the name of Jesus.

[tintinyum]

She is very beautiful.......god bless.

[FurballChocolate60]

Your daughter is beautiful!!!She looks normal like a perfect little girl!Trust the Lord,you'll find a way,and one more thing... Don't loose your fight,Sierra!!!Keep going!!!!!!!!!!!!

[daprice0041]

your daughter is beautiful! I have a daughter with Rett Syndrome also. She is 14.

[laineyful]

@daprice0041

Thanks...our girls are beautiful aren't they?

[Rivenga]

awww  im so sorry but she is very cute

[laineyful]

@Rivenga

Thank you!

[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 far away for humans. But what they discovered is that the nerves are not permanently damaged, they can be quickly restored. Check out stem cell therapy.

[sum41jaci]

such a cutie

[MissPiscespets]

What a beautiful little girl! That doctor should have taken your concerns more seriously. Parents should trust their instincts but its hard when doctors keep telling you that you're wrong. How is she doing now?

[Ravenfey17]

Thank you for your touching reply.

I have forwarded Sierra's story/youtube to the rest of my class here at University of Technology Sydney, so as to inspire them as well. Thank you again x

[Ravenfey17]

I am a nursing student studying paediatrics and Rett syndrome is a topic. You gift of sharing your life and your beautiful Sierra with me has reminded me of the human element of these syndromes. I am an advocate for the advancment of research in these areas. Thank you to your family for teaching and inspiring. Blessings and light

[laineyful]

@Ravenfey17 Thank you for taking the time to look at Sierra's video and your sweet comments. Best of luck to you in your Nursing career :)

[trishdonnelly]

Beautiful video and thank for taking the time to share and build awareness. Also having a little angel with Rett, I can relate to your heartache and sadness, your deep love for your little girl and the hope we have for a brighter future. Love and light to you and your family from Trish & Lily in Australia xx

[trishdonnelly]

Beautiful video and thank for taking the time to share and build awareness. Also having a little angel with Rett, I can relate to your heartache and sadness, your deep love for your little girl and the hope we have for a brighter future. Love and light to you and your family from Trish & Lily in Australia xx

[potaka79]

just got the phone call today. as you would no, it has not been a very happy day.

[laineyful]

@potaka79 ...I don't understand your post. What was the phone call you received? I know its not the diagnosis because the video of your daughter says she was diagnosed years ago.

[lolasalsa13]

@laineyful that video was someone else's

[dave4248]

She is indescribeably beautiful. Must be rough for her and you and your family. My 6 year old son is autistic, but things could be worse. He can at least talk some, and function in many ways normally. It's sad to see his 4 year old brother do some things better than him. But like I said, you know about heartache more than I do.

[laineyful]

@dave4248 ...thank you for your comments. You can always find someone who has it worse than you do, or better depending on how you are feeling at that moment. But I feel so lucky to have her. She has given me purpose and value. And its her strength and determination to give every bit of effort she can muster up to progress that inspires me. So, I have more joy with her than heartache now that she has shown me that joy.

[yenggandabae]

i have a daughter with rett's syndrome too .. at first its really hard to accept that my beautiful daughter has this kind of illness but then i dunt consider this as an illness but just a challenge that show me how much GOD loves us .. for me my daughter is really an angel .. and i love her so much .. :D

[laineyful]

Thank you so much for your comments! We are lucky to have people who care about our girls like you working side by side with them everyday. I'm so gad your angel has touched your heart like Sierra has touched mine.

[krisrenae32]

I work up at a middle school and happen to work in the severely disabled class most often. We have a sweet angel in there who has Rett's and she's stolen my heart! Your angel, just in this brief video, reminds me so much of her. She's a such a joy to be around and although she's unable to speak her eyes tell the whole story! Thank you for sharing your story with the world, and I have hopes and I say prayers that there will be a cure found soon!

[gothexperiments]

Heyy!!! She sure looks very happy :)) wish all the people of the world could be so happy..

[girlchristian1]

From one mother with a beautiful sick daughter to another - you're a real hero. God bless and keep your little girl

[laineyful]

Thank you so much for your post. You and I have tough jobs don't we. But I truly believe its our kids who are the real heroes. We are just along for the ride! And how lucky we are to have been chosen to be their parents! Best to you and your daughter and hope she is doing well!

[Jade41891]

Your video made me cry, Your daughter is veryy beautiful and i am terribly sorry to hear all that you guys have went through... I wish docters would just trust parents "insticts" from the beggining. I am going through something simular with my daughter, i have been concerned and asking questions since she was six months old. Now finally at 17 months she is going in for an e.e.g for possible seizures and getting evaluated for sensory processing disorder.. finally.. i will your family the best!

[laineyful]

Thank you so much for your comments! Best of luck to you and your daughter. I hope you find answers soon!

[CtyExaminer]

sweet baby, thanks for sharing. our stories unfold the same, we watch our babies get torn away by RTT, they're still in there! and we are adjusting to a new normal. blessings~ another mom of a precious baby with RTT

[cpbrueggemann]

I cried the whole time. Your story is so similar to ours, except our baby never crawled. Let us never give up for we are their hands, their feet and their voice!!

[gross1972]

What a fantastic video well done for putting together i will share with as many people as poss..our little one is 4 and you seemed to tell our story.. lets continue that hope that it could be our girls that live to see the cure xxx

[laineyful]

Thank you! I know we will find a cure soon!

[imcaligal]

Beautiful video and kiddos! Isn't it amazing how moms always know that something isn't quite right. I always tell people to go with your gut. Call your states early intervention program right away if you suspect anything. Keep going to doctors until SOMEONE finally listens to you. -Jenna (mom to Larsyn 3.5yo w/ severe verbal apraxia, dyspraxia, hypotonia, sensory processing dysfunction and dysmorphic facial features-still waiting for micro array results)

[birds16ful]

What is Sierra twin brother name & any other silbings what Sierra have & names & ages

[TURBOswiftgti]

Hi there, i work with rhetts syndrome children, dont lose hope, she may very well surprise you and start walking slowly. =)

[musicgirl999]

beautiful little girl!

[ConcreteAngelx3]

she is so beautiful!!!!.. those baby pictures i can not get over, so so cute!!... i have a twin brother too :) . he's 15 mins older... is she older or younger than her brother?

[laineyful]

Thank you :) She is just one minute older than her brother.

[polkadotpants]

What a beautiful tribute to such a beautiful little girl! I think it's true what they say about their eyes, they are unlike any I've ever seen before, almost ethereal. We are still waiting for Codey to speak, so far she babbles inbetween mouthfulls of fingers but she like your little beauty she continues to try; so far we have been rewarded with 'da' and 'go', those words give me hope for the future, and all children like ours xxx

[laineyful]

We hear words every now and then but usually they are not repeated. It seems like its more difficult if she has to actually think about speaking but if it comes out spontaneously then not as difficult. We won't give up hope either...just need to find that cure.

[rachtheflump]

Hi just wanted to day hello. my daughter (youngest of 3) has Retts and many of ur comments on the vid hit home with me. Jess has never spoke so I've never heard her voice she's never sat walked or fed herself. But she is as all Retts children are, a smiling angel, with a diamond sparkle in her eyes. Sending you heartfelt best wishes. Rachel xx

[laineyful]

Hello! Sierra only spoke on 2 occasions that my husband unfortunately was never able to witness. I don't think she will ever talk again but will keep hoping she will. She has progressed so far in many areas which makes me never want to give up hoping she will talk or walk. I feel so blessed to have her in our lives. Thank you for your comments and best to you and your angel!

[xmen1923]

My Little Sister Has Rett Syndrome.

[laineyful]

How old is your sister? I'm sure you are a great big sister to her :)

[gloosick]

god bless you for having the strenght and both ur beautiful kids well more oic of the gorgeous girl obviouusly bur they are both gorgeous GO BLESS UR FAMILY

[laineyful]

Thank you...your granddaughter is just adorable! I have subscribed to your videos. Best of luck to you and your granddaughter!

[dmgodfrey]

God bless you and your daughter. What a joy and privilege to have her in your life. Our grand daughter was diagnosed with Williams Syndome before she was 2 months old. She is a perfect addition to our family. I will subscribe to your site to kkep up with your daughter. I'd like for you to subscribe to mine and see our children over come their challenges.

[kcc4567]

Was Sierra getting any PT, OT or speech therapy before she was diagnosed? I'm just curious.

She's just too cute, by the way.

[laineyful]

We were provided with a teacher who mostly did fine motor and an OT who actually did gross motor. I don't think we were given enough resources prior to her diagnosis. I could not get speech for her until about a year ago.

[kcc4567]

Thanks. I work in an EI/ECSE program and we see lots of kids who aren't referred until they are 2, 3 or even later. It kills me to think of the time lost, and the time parents had to spend without help or someone to believe them about their child. The Rett's is so obvious in her 18 month pictures, but you do have to know what to look for. And wow - no speech until she was four? That's crazy. The girls are so good at communicating with eye gaze, aug com, etc. Good Luck! These girls are a joy!

[Closed8]

I cried while watching. Your little ones story is identical to that of my younger sister. From the 'development delay' title, seizures everything. It hurts so bad to think something that is ment to be so perfect, that you created from love could be so unfortunate to have this neurodevelopmental disorder. But then she will smile or laugh and be so happy just being... her. Its thoes moments that you'll draw strenght from. Its what makes her special. Its what makes her... her! :)

[laineyful]

Oh thank you for your comments. I truly believe we are so lucky to be chosen to be her parents. She is really such a sweet little girl and brings us so much joy!

[iminlove4u2]

I Absolutely Love Her Long Eyelashes. My Daughter Is 3 And Her Lashes Are Veryy Long!

[laineyful]

Oh, thank you...yeah, I wish I had her eyelashes! I think Rett girls have beautiful eyes in general.

[mf3wad]

i feel with what you feel with. I'm a mother of a girl with rett syndrome. your daughter is typical mine. i pray not only to my daughter to all like her.

[laineyful]

Thank you for your comments :)

[jessica4998]

im so sorry

did sierra survive???????????

[laineyful]

She is very much alive...healthy and happy.

[chelleemorgan]

She's beautiful!

[laineyful]

Thank you :)

[adelfred]

This must be the most heartbreaking disorder ever, I used to work with a girl with Rett Syndrome...