Thursday, April 6, 2017

Siblings in the Spotlight

We love our Rett siblings! Today, we'd like to introduce you to Hayden, sister to Rett Girl, Harper!

  1. What's your name?   Hayden
  2. How old are you?   6 years old
  3. How old is Harper?  3 years old
  4. What grade are you in?  1st
  5. What's your favorite subject in school?
    I think art and math.
  6. What do you want to be when you grow up? I want to be a horse trainer

7.  Do you feel like your life is a lot different from your friends? Yes I do. Many of my friends have siblings who don't have Rett Syndrome. Harper is way different. She can't climb in my club house or run with me or talk to me at night in our bedroom.
8.  Your parents probably have to spend a lot of extra time with Harper (doctor appts, and hospitals) do you get jealous, or how does it make you feel?  It makes me feel sad that she has to go everywhere that she doesn't want to go to.  She would rather go to school and make friends and learn how to walk and talk with other people.
9.  Can you explain (in your words) what Rett Syndrome means to you?  Rett Syndrome means to me...  it's... it's... when I feel like someone has Rett Syndrome they are sick and I worry. If they are sad or uncomfortable I worry that something bad is going to happen. Rett syndrome is painful and it hurts and it makes you go to the hospital a lot and go to the ER.
10.  If you could cure Rett Syndrome by giving up something, what would you give up?  I would give up ANYTHING to help her get better so she could go outside and have fun and play and be free from doctors and medication stuff.
11.  If you could ask Harper one question right now, from you, what would you ask?  I would ask her if she wants my attention or if she needs me more. If she wants something from me I'll give it to her. 


12.  Do you participate in any fundraising for Rett Syndrome you would like to tell everyone about? I am planning on going to Disney next year to run the marathon.
13.  Can you tell me a sad or frustrating time you experienced with Rett Syndrome? I don't like when she is screaming, yelling and sad and I can't fix it. She can't blow out her birthday candles. I have to do it for her.
14.  What about a positive experience?  I drove her around in a Power Wheels Jeep and she laughed so much and I really liked that. 


 

15.  Do you like talking to people about Harper and explaining Rett Syndrome?  Not really. It makes me uncomfortable.
16.  What is your favorite thing to do? I like to practice gymnastics and dance.
17.  What's your favorite thing to do with your friends?  I love roller skating and riding my bicycle



 18.  Do you have a favorite sport?  Yes! Florida Gators Gymnastics!

19.  What is your favorite thing to do with Harper? 
I like to make her laugh by talking silly or acting like I am burping. She thinks that's funny!

20.  What would you like everyone to know about Harper?  She is smart and very funny! If she is crying I sing to her. She likes "If you're happy and you know it". She LOVES Toy Story. 

21.  Last question, what is one thing that not many people know about you?  I take a lot of my time to figure out what makes Harper happy. 



Attention Rett Siblings:

If you would like to share with us, please answer the above questions and email Bridget@gp2c.org.

If you would be interested in emailing or writing letters to other kids around your age with siblings with Rett Syndrome and getting to know some other kids like you, please let us know! We would love to help you make new friends and maybe you can help each other with all kinds of different things! Email kristin@gp2c.org.

Monday, March 13, 2017

Everyone Deserves a Voice




SPRING VOICE DRIVE! VocaliD is excited to partner with Rettgirl.org to host a VoiceDrive [April 15 - June 15, 2017, follow us on Facebook and Twitter for more details]. 

The voice-to-voice interactions we share everyday are a bond as powerful as touch. Voice is intrinsically hardwired to our sense of "connectedness" and community. Our voice instantly conveys the unique and wonderful qualities about our identity-- our age, our gender, our ethnicity, and for some of us, even what region we are from. It’s how people know us-- it’s how they remember us. Think about the last time you called someone you love on the phone, you probably simply said, ‘hello’ and they knew it was you.

Everyone should have their own voice. Yet there are tens of millions worldwide who are unable to speak— including those living with Rett syndrome, cerebral palsy, autism, Parkinson’s Disease, ALS, head/neck cancer and many other conditions. These individuals rely on alternative, augmentative means of communications such as computerized talking devices. Although today’s talking devices provide a means to communicate, they cannot fully enable identity because they all sound the same. We wouldn’t dream of fitting a little girl with the prosthetic limb of a grown man, why then the same prosthetic voice? 

At VocaliD, we believe that everyone has a unique voice that deserves to be heard.

To deliver on this, we have crowdsourced the voice collection process. Instead of a voice actor spending weeks recording, anyone can record on our online web platform. All they need is a computer running Google chrome, a headset microphone and a quiet room. Today, over 20,000 volunteer speakers ranging in age from 6-91 from 110 countries have contributed more than 9 million sentences to our Human Voicebank initiative. That means we can create a variety of diverse voices. But we can do more. 

We can now reverse engineer a voice by blending vocal samples of those who are unable to speak with several hours of recordings from a matched speech donor. That’s because, through years of research, we’ve discovered that even a single vowel contains enough vocal DNA to seed the voice personalization process. This discovery, along with our growing Voicebank and voice blending algorithms, allow us  to create unique digital voices for a fraction of the price and with all the warmth and nuances of the natural human voice. 

Our recipients include kids like Leo. While Leo can’t articulate words, he is a fierce and proficient user of his talker which is his primary means of communication. For Leo’s parents one of the biggest hurdles was getting him to feel comfortable using the talking device in public and not be embarrassed about the way it sounded. Unfortunately, this is an experience that many parents who have kids with speech limitations can relate to. Children are less motivated to speak when they don’t feel their device represents who they are and when they know several other children and even adults who use the same voice. Thanks to thousands of voice donors from all over the world, VocaliD was able to customize a voice just for Leo. You can see Leo’s full story which was recently featured on NBC Nightly News.




 At VocaliD, we take pride in crafting a voice that fits our recipient-- in age, gender, tone and even accent. To do this we engage with families and communities to share their voice on the Human Voicebank. One of the most powerful things has been to see children and youth engaged in contributing their voice and even organizing voice drives within their community, for a bar/bat mitzvah or girlboy scouts project or as a service learning project. We have found that siblings whether younger or older are very excited to participate in a project that supports the nonverbal community. This is life changing stuff!

Even as recent as 20 years ago, individuals who would have been shut out by limitations in their communication are now living vibrant and connected lives. Our early adopters are talking more – as much as 300% more; at school, with friends and with strangers.  And it’s not just the recipients that benefit. A father of a 9 year old who received our BeSpoke voice said “It’s as if I’ve heard my daughter for the first time.”



There is still much work to be done. Creating custom voices requires high quality recordings and crowdsourcing doesn’t always yield the best quality recordings. So, let's do something to change that!

SPRING VOICE DRIVE! VocaliD is excited to partner with Rettgirl.org to host a VoiceDrive [April 15 - June 15, 2017, follow us on Facebook and Twitter for more details]. 

Please join us, as we give VOICE a whole new meaning. Because individuality matters, and it always will.

To contribute your voice, visit www.vocaliD.co/voicebank*
To learn more about our custom BeSpoke voices visit www.vocalid.co/products

*Please note that by contributing your voice, you are donating your voice recordings for use by those in need, you are not creating a voice for a specific person.

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About VocaliD
VocaliD is redefining how we interact with one another and our intelligent devices. We create custom digital voices as unique as fingerprints by leveraging our growing Human Voicebank of 20,000+ speech donors from around the world and proprietary voice blending algorithms. Our personalized voices empower millions who use assistive communication devices to be heard as themselves! 



Thursday, February 9, 2017

Difficult Decisions with Life Altering Benefits

by Nikki Dawson, Rett mom to Skylar

The past three years I’ve had to make some of the toughest decisions for my daughter, decisions that were truly life altering and not easy.  Skylar was having seizures almost daily, had severe scoliosis, and chronic lung infections. She was on five seizure medications, had a vagal nerve stimulator (VNS), and seemed very lifeless.  She had been seeing the same neurologist for over 10 years and while personally I liked him (and felt kind of guilty) I needed to see if there were other options for Skylar.

I had heard of the Rett Syndrome clinic in Cincinnati and figured it can’t hurt to at least go once and see if they had anything to offer, I had felt that Skylar was seeing plenty of specialists and honestly didn’t think the Rett clinic would have much else to offer, but I was happily proven wrong.

We made the trip to Cincinnati (4 hours each way) and met the team headed up by Dr. Standridge, a neurologist.  Over the next few months we were weaning seizure meds, changing her VNS, starting the ketogenic diet, and I was seeing more and more of my girl's personality everyday.  Meanwhile we were also starting the process of getting ready for scoliosis surgery, which I was terrified of.  March 5, 2015, the day of surgery, was the longest day of my life.  I talked to many other parents, the surgeon, and spoke to Dr. Standridge on the phone prior to surgery to try and prepare, but still didn’t feel ready.  It was a tough recovery and 16 days in the ICU but to see her so straight and tall was amazing.  It wasn’t long till I could really see the results, Skylar was more interactive in her environment, holding her head up more, smiling more, and much happier.



Still seeing Dr. Standridge at the Rett clinic every 4-6 months and finally down to only two seizure meds without an increase in seizures but without much of a decrease, I was still hopeful for more.  I had heard of cannabis many times and have always been curious if it would be helpful to Skylar.  I did some research to find a good reputable product, sent the recommendations to Dr. Standridge, and saved the money.  (Cannabis is legal in all 50 states and can be ordered online and shipped to your home, it does not have the psychoactive ingredient in it that marijuana does that gets you high.) Starting Cannabis was a little tricky to get the dosing right, but once I did it’s been amazing.  Skylar has been able to wean off another seizure med and is currently only on one, along with her VNS, and half strength ketogenic diet and has less seizures now than when she was drugged up on the five seizure meds.  She’s not seizure free, but they are fewer and farther between,she recover more quickly, and we rarely use a rescue med.



Sky has now been on cannabis for eight months. The best feeling is when her teachers/aides/therapists at school tell me they have never seen her happier and healthier, she’s so expressive and social, she’s so quick to respond.  I honestly believe if I had not taken the initiative to go to the Rett clinic, life would be very different for Skylar right now.  Dr. Standridge and her team have helped turn her life around for the better, and I am forever thankful.  Even though I didn’t believe we were getting bad care, I felt that Skylar could be doing better, and I’m so glad we went to the Rett clinic and started this journey.


IMPORTANT Disclaimer:  Please remember each and every one of our Rett Girls is different.  Please speak with your child's physician before starting cannabis or any other medication, vitamin or supplement.

Wednesday, January 11, 2017

Siblings in the Spotlight!

We love our Rett siblings! Today, we'd like to introduce you to Ayden, brother to Rett Girl, Quinn!


  1. What's your name?   Ayden
  2. How old are you?   8 years old
  3. How old is Quinn?  4 years old
  4. What grade are you in?  3rd
  5. What's your favorite subject in school?
    That's a hard question, I would say science or math.
  6. What do you want to be when you grow up?  pharmaceutical scientist


  7. Do you feel like your life is a lot different from your friends? yes
    Good way?  I get to learn more about Rett Syndrome
    Bad way?  Sometimes it's hard to have a wheelchair dependent and nonverbal person
  8. Your parents probably have to spend a lot of extra time with Quinn (doctor appts, and hospitals) do you get jealous, or how does it make you feel?It makes me feel happy because she is getting the care she needs, and I'm getting the care I need. I never get jealous.
  9. Can you explain (in your words) what Rett Syndrome means to you?A regular girl that is nonverbal and can't walk. There is nothing wrong with her, just something going on inside her.
  10. If you could cure Rett Syndrome by giving up something, what would you give up?I would give up my laptop and all my toys
  11. If you could ask Quinn one question right now, from you, what would you ask?2 questions:
    Are you happy we are doing all these donations for you to find a cure?
    Do you feel happy? 

  12. Do you participate in any fundraising for Rett Syndrome you would like to tell everyone about?Yes, Racing for Rett.  It is a 5K, that we donate money to research for Rett Syndrome.
  13. Can you tell me a sad or frustrating time you experienced with Rett Syndrome?When sissy was in the hospital and had to go to the  PICU.
  14. What about a positive experience?When she giggles
  15. Do you like talking to people about Quinn and explaining Rett Syndrome?Yes, like my friends and classmates
  16. What is your favorite thing to do?
    play with my sister and play baseball
  17. What's your favorite thing to do with your friends?  play Minecraft
  18. Do you have a favorite sport?  baseball
  19. What is your favorite thing to do with Quinn?
    roll around on the floor and make her laugh
  20. What would you like everyone to know about Quinn?She understands you but she is just cannot speak back.
  21. Last question, what is one thing that not many people know about you?Nothing
Thanks Ayden!! Keep being AWESOME!      

Attention Rett Siblings:

If you would like to share with us, please answer the above questions and email kristin@gp2c.org.

If you would be interested in emailing or writing letters to other kids around your age with siblings with Rett Syndrome and getting to know some other kids like you, please let us know! We would love to help you make new friends and maybe you can help each other with all kinds of different things! Email kristin@gp2c.org.

Sunday, December 11, 2016

No More Ceilings

by: Duncan Millar, Army of Us

Duncan and crew taking on one of many challenges to raise awareness for Rett Syndrome.


There are many things about Rett syndrome we all wish we could change, but there are also some things we already can.

Somewhere along the line, somebody thought that because Rett syndrome affects the brain, it must affect intelligence. But, now we know that the intelligence of people living with Rett syndrome has been severely underestimated.

It’s not only that we have completely misjudged their intelligence, but also how we have been taught to make a negative the starting point of every conversation we have about Rett syndrome.

Instead, like we do with other children, we should choose to believe in their potential with no limits. The sky's the limit; they can reach for the stars.

It’s been 5 years since I was introduced to Rett syndrome.

My first mistake was to Google it, my second mistake was to believe what I read. As soon as I did, I started building ceilings.

I read that my goddaughter Carys would never walk, or talk, that she would have breathing problems, seizures, weight gain problems, scoliosis, osteoporosis and most importantly I read that Carys would never exceed the intelligence of 7-year-old girl.

Those things became the foundation of the ceiling I was building. It was incredibly low and it blocked out the stars.

I then discovered Rett had been reversed in a lab, a cure had been found. All we had to do was raise as much money as we could. I’ve run countless races now, participated in more Tough Mudders than I have fingers. I’ve climbed the highest peaks in Britain and I’ve completed an Ironman. I was part of a group that formed a charity to try and help raise money for this cure.

My world exploded. Suddenly Rett syndrome was more than just Carys, it was filled with loads of new people: parents, families, friends and most importantly, other people living with Rett.

When I found out that some of these people were communicating, reading and even controlling their lives, it was a dawning moment for me; the light switched on.

While the future of Rett syndrome is very, very important, people living with Rett syndrome right now are more important.

There are things we are fighting to change, but there are also things we can change right now.

These people are smart, they’re chock a block full of amazing, unbridled, exciting, raw potential. They are funny, they are stubborn, they are more tenacious than any Olympic athlete. Our role is to help them break through those ceilings and see the stars. To be the stars.

This is why I fight Rett syndrome, because I believe that goal is attainable. I choose to surround myself with people who break ceilings and reach for the stars. I believe in the people who are fighting to give the girls the tools to empower them and equip them so that someday, they will be the people leading the army.

I’m now lucky enough to be the Godfather of two people, and share in the lives of countless other girls (and a few boys) living with Rett syndrome. Whilst they live with it, it doesn’t define them. Carys and Melody are unique and most importantly, I bet neither of them have built a ceiling for me.


From all of us at Girl Power 2 Cure and RettGirl.org, we thank you Duncan for your never-ending passion, commitment, and amazing sense of fun which helps our entire community strive to be the best and do the best for our girls. 


Thursday, November 3, 2016

First Words

by: Sarah Wilds M.S., CCC-SLP - Speech Pathologist/ Regional Consultant for Prentke Romich Company (PRC)

Those first words are everything.  There’s nothing like hearing your child say “mama” while grinning and pointing.  But when those words come and then disappear, or don’t come at all, there’s no clear path for what happens next.  As parents, we’re not prepared for asking difficult questions or hearing uncomfortable answers.  We rely on each other and our gut feelings.  As speech pathologists, we don’t have a rule book for introducing augmentative and alternative communication (AAC).  We rely on listening to families, watching our clients, clinical judgment, and trial and error. 

In my capacity as a Speech Pathologist/ Regional Consultant for Prentke Romich Company (PRC) I’ve encountered hundreds of children and their families/support teams. I’ve had to wrestle with discord between family wishes for their children’s communication and my professional judgment. I’ve had to balance the communication option that I am certain will be successful in the long term but doesn’t have the short term success that the team wants.  This precarious balance has never been more evident than in my work with girls with Rett Syndrome.  Which language system is best?  Which access method will be most efficient?  How can I encourage implementation of AAC when there are so many other obstacles families are facing?  Three girls have shaped how I work with individuals with Rett Syndrome, and they have all taught me different things by letting me into their lives. 


Chrissy taught me that words matter. I met her when she was about 4 – a strong-willed, determined little girl who broke out in huge grins when her parents or princesses were involved.  I worked with her before her diagnosis of Rett, and she used her hands to access Unity (a language system with hundreds of pre-programmed words).  She wasn’t always exactly on target, but she loved exploring. And we knew that she was being intentional about her message when she repeated a word or phrase several times and then switched her gaze to us.  At one point, her therapists and I took away some of the words to help her learn the “important ones,” leaving her with about 10-20 words.  This didn’t go over well – her enthusiasm for using the device stopped.  Once we added in more words, however, she forgave us and jumped back into exploring and using the device intentionally.  Words matter. We needed the option to start simple, but in order for success to occur we had to think big.


Jordynn taught me that access options are important.  Jordynn is three – a social, active little girl who has eyes that you can get lost in.  When we started looking at AAC, her speech pathologist had recommended the NuEye eye gaze access method because of her Rett diagnosis.  Her desire to touch the device, however, led Jordynn’s mom and I to think more about touch access instead. When that proved to be inaccurate, even using really large buttons, we then trialed NuPoint (PRC’s head mouse).  Although Jordynn had good head control, her head movements and her eye movements weren’t coordinated, so she would look at a button on the screen with her head turned in another direction and select the wrong word.  We finally came back to the initial recommendation of NuEye.  Jordynn did beautifully with 15 buttons on the screen and especially enjoyed using the core words to help her mom read books and her fringe words to select what type of food she wanted. I apologized to Jordynn’s mom for trying out the different access options before ultimately circling back to NuEye, but she kindly noted that she was thrilled to see all the different access options available.  Knowing those options existed not only helped cement her commitment to eye gaze, but also gave her comfort in knowing that there were additional access options available if necessary.

Finally, Mary taught me that a network of support is essential. Mary is a sweet 12-year-old whose smile lights up a room.  After years of using low-tech boards and books, she began using an Accent 1400 with NuEye late last year.  When she first started, and with the addition of daily therapy, she was successful with 28 buttons on a screen, but with many of the buttons hidden.  After a summer break where travels precluded much device use, she started this school year struggling to be successful.  Phone calls, online trainings, and in-person visits helped re-establish positioning and fine-tune calibration.  But more was needed to jump start communication.  So I called in back-up. An experienced colleague suggested we enlarge the buttons on the screen to focus (at least for a while) on increasing Mary’s confidence and ability with eye gaze in general.  It truly takes a village to support a child with AAC: the device itself is a start, but the enthusiasm, dedication and hard work of those surrounding the child and that device that are essential ingredients to communication success.  One person can’t do it, one website can’t do it – a full network of support resources is crucial.


Words matter. Access options are important. Support is critical.  These are the lessons I’ve learned from working with girls with Rett Syndrome.  I’ve watched as within the AAC industry device hardware/ eye gaze systems have improved, vocabulary options have expanded, and support resources have become more individualized. All of these mean better communication outcomes for individuals with Rett syndrome and others who use AAC.  But we still have lessons to learn, and improvements to make, and keeping the conversation open and learning from each other is a start.