Tuesday, July 11, 2017

Introducing our RettGirl Spotlight Series

 We are excited to share a new spotlight series of some of our beautiful young women and their families who have been on this Rett journey for a bit. We know all our girls and women are different, but we all have Rett in common. These incredible young ladies (and their moms) share a little about themselves, how they fill their days and some sage advice for living life to the fullest.

Meet Racheal!  Racheal is 35 years old and is AMAZING!

1.What is one piece of advice you would give to a Rett mom?
Patience is a virtue and take it one day at a time!

2.What would you tell a newly diagnosed family?
There is incredible joy in small moments. Listen to your daughter by how she communicates with you and believe and trust in yourself that your decisions for her are what's best. Don’t second guess yourself, instead, remember, you are loving them, caring for them and they know it. 

3. What are some of Racheal’s favorite activities?
Racheal loves music therapy, being with her family, and swimming.

4. What has been your biggest struggle so far?
Communication is a challenge but we’re working on it. Breath holding and excessive salivation continue to be challenging along with getting around in public including restrooms, sidewalks etc. We still have so much more to do to help others learn and understand all about our beautiful girls and what they need to live life to the fullest.

5.What has brought you the most joy? 
Racheal's smile and how she looks at me. I know she loves me so much just by her eyes and how she looks at me and to see her enjoy most of what we do together.

6. How do you continue to make time for yourself?
Time for myself, what's that? You do have to take a break. Family support is critical and we have respite care from time to time. Racheal really enjoys getting to go to camp each summer.
 

7. What do Racheal’s goals look like as an adult?
Goals right now are working on purposeful hand use and further developing her communication. We are also focused on getting her involved in community activities and volunteer work when possible.


Special thanks to Racheal and her mom Cheryl for sharing a little about themselves. We look forward to hearing more about Racheal and what she’s up to and all the wonderful experiences yet to come.


Tuesday, June 6, 2017

Exceptional team gives tribute to a very special girl after a 12 year partnership

We have been blessed to be in a small, caring community. Tori started school on my campus at the age of 3. She was mainstreamed in a regular education classroom as much as possible. On the playground she was surrounded by kids who always wanted to help her out. When she was in kinder, she met our school's PEIMS secretary's daughter, Carly Bass.  Our families had had a connection since her older sister had been in my classroom and her mother and I became friends. I have a picture that I keep on my desk of Carly and Tori walking hand in hand at our school's costume parade. Through the years Carly has maintained a special place in her heart for Tori and kept an eye on her as they moved through the school system.
  Tori has been well known in this community. I have taught first grade here for 18 years and often talk openly with my students about her and the challenges she faces. Her two older sisters cheered and participated in sports, so Tori was out and about in the community. For the past few years, the students and many of the faculty have been extremely supportive of my fundraising efforts with gp2c by sponsoring "Gardens of Hope" during Rett Syndrome Awareness month.  Karen Smith, a fellow teacher, even joined Team Tori the past few years and is running again in 2018!

This year her team of teachers, fellow students, and some community members went over and above to make sure her last year with the district would be special. In November, Erin Springs (a second grade teacher and a mom of one of Tori's classmates who also happens to be a former student of mine), gathered the students who had been in school with Tori since kindergarten together and had them surprise us with a show of support at the senior pep rally. They asked me to come and speak about Rett Syndrome and my t-shirt sale fundraiser. As I was speaking with Tori by my side, they silently filed across the gym behind us wearing the shirts I was selling that said "Tori Texan Tough".  (we are the Wimberley Texans) 

Fast forward to prom. I had asked her teachers if they would meet us at the prom so Tori could go in with them for an hour or so, just to experience it. They started making plans and before I knew it, they took all the junior and senior members of their life skills class that wanted to participate, out to dinner AND to prom. They had such a good time with them that they were late bringing them back to the high school because they were all having too much fun! 

The last event of the year was graduation. I had requested that Tori walk across the stage to receive her diploma and the plan had been for one of her teachers to escort her. A week or so before graduation, they asked if one of my daughters wanted to escort her. They really wanted to sit with the family and watch though. One day, a few days later, my school secretary, Janiece Remeny, and her daughter, Carly, came by my room. On a whim, I asked Carly if she would want to escort Tori across the stage and she said, "Yes!!!" We talked about how Tori could be unsteady on her feet and nervous, but Carly said she was honored to escort her.  They practiced walking together several times and I assured her there would be a teacher near by at all times in case she needed help.  The great part of this story is that Tori loved every minute of it and her and Carly did an awesome job! They crossed the stage together to whoops and applause! It was the one time that Tori got to blend in with her peers and we were so grateful and proud! 



Her teachers, Karin Prado, Ryan Durkin, Melissa Cockerham, Cristy Cruz, Mackenzie Heintze, Cassie Mahlie, Beth Nettles, Brooke Hicks, and Cindy Klossner overcame many obstacles to ensure that Tori's senior year was full of love and great memories. They held a chili, cornbread, and dessert cook off contest to help raise money for Team Tori's Disney Princess run. They got many of her classmates involved in the Special Olympics and Tori had a wonderful PAL (Peer Assisted Leadership class), named Alexa, who spent time with her throughout the school year. They made sure these kids got out in the community and learned many valuable life lessons. They did their best to help others see past Tori's difficulties and see that in many ways, she's just like her peers.

Tori's classmates and their families have supported her by contributing to our fundraising efforts. Although it's hard for them to communicate with her, they have shown an interest in her Syndrome throughout her years at WISD and brought me to tears when they voted to have the monies received during the baccalaureate ceremony this year donated to gp2c in Tori's honor. Their collection raised a total of $624! 

While we have had our hurdles to climb, living in this community has been a blessing. We are forever grateful to the ones who have stood by our side and supported us without waiver through the years! Special shout out to Amy Canter, Kathy Lindsey, and Melissa Simpson, her OT, PT, and speech therapists, who have been with her off and on for her journey through WISD. 

written by:  Lisa Krauskopf
We wish you the very best of luck in your next adventure Tori!!

Monday, May 8, 2017

Siblings in the Spotlight!

    We love our Rett siblings! Today, we'd like to introduce you to JaeLyn and Kyla, sisters to Rett Girl, Brynlee!


    1. What's your name?   JaeLyn/Kyla
    2. How old are you?   10/8
    3. How old is Brynlee? 3
    4. What grade are you in? 4th/2nd
    5. What's your favorite subject in school? art (both)
    6. What do you want to be when you grow up? Art teacher (both)


     7.  Do you feel like your life is a lot different from your friends? no 

    8.  Can you explain (in your words) what Rett Syndrome means to you? having seizures, maybe going to lose the movement in her hands 

    9.  If you could cure Rett Syndrome by giving up something, what would you give up? TV and video games 

    10.  If you could ask Brynlee  one question right now, from you, what would you ask? How does it feel like to have seizures, what are you feeling right now, was it scary to go to the hospital?






    11.  Do you participate in any fundraising for Rett Syndrome you would like to tell everyone about? not yet (just diagnosed in October)

    12.  Can you tell me a sad or frustrating time you experienced with Rett Syndrome? Brynlee going to the hospital 

    13.  What about a positive experience? Her being here, her being my sister 

    14.  Do you like talking to people about Bryblee and explaining Rett Syndrome? no because it makes me cry.  

    15
    .  What is your favorite thing to do? art/video games

    16.  What's your favorite thing to do with your friends?  video games/play 

    17.  Do you have a favorite sport?  soccer/dance

    18.  What is your favorite thing to do with Brynlee? make her laugh 

    19.  What would you like everyone to know about Brynlee? That she has Rett Syndrome.  

    20.  Last question, what is one thing that not many people know about you? I don't think about Rett a lot/I do think about Rett a lot. 


    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.

    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.

    —————————
    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.