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

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

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, 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. 

Thursday, August 18, 2016

Rett Mom's Crafty Side Helps Daughter and Others!

Meet Shirley. She has a 15-year-old daughter Kaila who has Rett Syndrome. They live in Upstate NY with husband/father Paul and their other daughter, 7-year-old Kinley. 

Shirley shares, "I have always been a crafty person. I enjoy scrapbooking, sewing, jewelry making, and many other types of crafts. I especially love making things that are Rett Syndrome related. (One year I made over 100 bracelets for all of the attendees at a Rett Syndrome conference!)"

Shirley took her skills to the next level, creating a business making items to help families of special needs children. In honor of Rett Syndrome's awareness color purple and her daughter, she named it Purple Princess Designs.

"I began sewing wheelchair pads and bed pads because one day Kinley had a friend over and they asked what those green things her sister was sitting on were," she explains. "Those 'things' were the dreaded, disposable Chux pads. I didn't want Kinley to have to explain that and I didn't want Kaila to have to deal with those innocent questions. That's the moment I decided I had to come up with something that would be cute enough that it would look like an article of clothing yet be functional. We had some reusable pads that looked just like Chux, so I sewed some cute fabric on them, and Purple Princess Designs was created!"  

Kaila sitting with the Chux pad before her mom's creation

"My hope is that other families will love these as much as I love making them." 

You can shop for wheelchair pads or mattress protectors at Purple Princess Designs' Face Book Page.

Wednesday, July 13, 2016

Rett Siblings - They Need Inclusion Too

Guest Blogger - Stephanie Millard

Rett Syndrome came into our lives about 14 years ago, when my daughter was just three and a half. We had been on a nearly two-year mission to figure out what had been taking away Allie's skills, her words, and her sweet temperament. I admit that during that time, and for a few years after, her brothers (one five years older, the other two and a half years younger) did not get the attention or opportunities they probably should have, and it has impacted each of them differently.

Allie's older brother was so thrilled when his baby sister was born. He held her and played with her, filled with love and joy at her very existence. When she started experiencing what we now know are the early stages of Rett regression, he was sad and didn't understand what was happening, but none of us did, so I told him not to worry about it and that everything would be alright. He seemed to just accept that and continue on with school, and with being the best big brother he could be. He handled the stares and whispers so well that it never occurred to us he might be struggling. When he was not quite ten he finally told me he had thought it had been his fault - that he had somehow been responsible for all the screaming and biting.

By then he knew it was the gene, and not his fault, but that he had ever felt that way made me so upset with myself for the pain he could have been spared. I had been so busy with caring for Allie, taking her to appointments and therapies, attending EI/ IEP meetings, and so much else, that I had not really paid attention to how he was doing. I helped him with homework, went to parent / teacher conferences, and assumed all was good because he seemed fine. I hadn't noticed how isolated he had been, how few play dates he went on, and how deeply impacted he had been by adjusting to life as a Rett sibling. That conversation about how he had felt responsible and had kept all his guilt and grief to himself really was a wake-up call for me.

"Inclusion is something we fight for on behalf of our special needs kids, and it can seem odd to think that Rett siblings might need a plan for inclusion in non-Rett world."

From that point forward, we (my husband and I) made a point of finding a life for our boys outside of Rett. We had to establish a type of "inclusion" for our Rett Siblings. For our older son that meant participating in sports some, taking guitar lessons, experimenting with a Billy Idol look, and just taking the time to get to know himself, all while balancing time with his sister. Because he hadn't always been a Rett sibling, finding the blend between the Rett and non-Rett world took more effort than it did for his younger brother.

Allie's younger brother never knew a life without Rett. And, of course, by the time he was old enough to realize his sister was not like other sisters, we parents had already been through the hard questions and were ready with better answers than we'd had for our older son. We made sure he had time with peers and engaged in activities outside of school or church. Athletics has been a major part of his life, though he still makes sure to spend time with his sister. Finding the balance seems to have been easier for him, and we'll never know if that is because he is younger, or because of some other quality inherent to his makeup.

The takeaway comes down to acceptance and inclusion. Once Rett entered our lives, we accepted it - maybe a little too well, forgetting for a time that there was still a non-Rett world. The other half of acceptance is knowing that no one gets parenting 100% right - and that's true for families with or without special needs, so don't beat yourself up when you realize you could have done it better.

Inclusion is something we fight for on behalf of our special needs kids, and it can seem odd to think that Rett siblings might need a plan for inclusion in non-Rett world, and yet it also seems completely reasonable. The life of a Rett sibling is not typical, and needs incorporation of peer activities that will help them establish themselves as individuals outside of Rett. Now, if we parents could learn and remember to do this, too, that would be fantastic.

Thursday, May 12, 2016

Teaching Math When You Can't Put Pen to Paper

My sweet Rett Girl is 11 years old.  She is one super smart cookie!  She is in a 4th grade general education curriculum and ROCKS it!  Several years ago we made the decision to homeschool and haven't looked back since. 

Annie LOVES science and history.  We've been able to find some really great science lessons that hold her attention and of course she LOVES the experiments.  History is fun because she's a reader and will get really interested in all of the stories from the past.  These subjects seem to be the easiest for her because they're FUN!

Reading and writing are a bit more difficult, we need to be having a good day and have a good chunk of time set aside in order to work on reading comprehension or writing short stories.  Thankfully we have Rett University to help us out with these two challenging subjects.  The resources there have helped us tremendously and have really shown me what Annie is capable of.  

Math is a subject where Annie and I both fall VERY short.  Annie is not a fan of math, and I have scoured the Internet up and down trying to find a way to teach, and do math with someone who is unable to put pencil to paper.  This is the challenge, when you can't write down your steps upper level math becomes very difficult.  Truth be told we got so frustrated that we actually took some time off of the subject.  

Then one day as I was scrolling through Facebook I saw an ad for a DVD with simple stories and animation to teach kids their upper times tables.  And not only teach them but this DVD has been shown to teach kids in less than a week!  What?  Of course I had to buy it and try it out for myself!

I ended up purchasing the download so I could get the videos same day. That afternoon Annie and I started working on math again!  Annie is VERY attracted to animation so the videos caught her attention right away.  The videos were very engaging for her and were pretty short so we started watching them daily for about a week.  There were printables as well that were very easy to modify. I'm happy to say that Annie has done great with the videos and it's been a huge relief for me to find something that could help her continue with her math curriculum.

The method that Times Tales use is simply stories that provide students with a "memory peg" allowing them to quickly recall facts.  The stories aren't very exciting and they're only a couple sentences long but after each story, the video shows how it translates into math problems. 
During the beginning of the DVD, you learn the characters, each of which symbolizes a number. The characters (numbers) are used in the stories (math problems).  It's abstract and seems a little funny at first when you watch the DVD's but if your kiddo is a visual learner it may be worth a look!  

You can check out a sneak peek HERE.

If your interested in purchasing Times Tales, Rett Girl has set up an affiliate program with them. Use THIS LINK and 30% of your purchase price will go to Girl Power 2 Cure to further our mission.  Check it out and let us know what you think!  

If you have a great product or idea for teaching math or ANY subject to kids with Rett Syndrome or complex needs please share with us in the comments!  

Happy Learning!
Bridget MacDonald