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  

Thursday, April 14, 2016

My Child's Surgery was a Source of Inspiration

by Nicole Puzzo
mom to Stella (age 6) and creator of zipOns™

You never can prepare yourself enough for watching your daughter at the age of 5 1/2 years old undergo double hip surgery, hamstring, adductor and calf lengthening as well as trigger thumb release all at one time.

Creator Nicole Puzzo with business partner Joanne DiCamillo

My name is Nicole Puzzo and my daughter Stella has Spastic Diplegia Cerebral Palsy and is in a wheelchair. Through all the ups and downs that we go through with our children, watching my daughter through this healing process was an experience that I first wouldn't wish on anyone, and second only reconfirmed for me how amazingly strong our children are and how hard they fight. It is truly inspirational to be apart of their journey.

Stella's recovery lasted 10 weeks, with an 8-day hospital stay. When we came home it was very emotional for all of us to be there to help Stella through this period. There were many sleepless nights and long days. However, I have to say with each day that passed, like most things, it got better and better.

Stella was stronger, healing and finding her smile again. What I found so interesting throughout the process was when I asked doctors what I would use for clothing for Stella during her recovery (because she had two casts and a bar to hold her hips in place) they didn't have an answer for me. They told me to use dresses and nightgowns but she was unable to wear underwear so although a solution, she was still feeling exposed. Needless to say with any recovery, we had a big support system and many visitors.

To provide Stella some privacy, I came up with pants that opened all the way up on each side. I took a pair of pajama bottoms apart and added velcro to the sides so they could be taken on and off without going over her casts. This was a game changer for Stella! She was more comfortable and she started to feel a little bit more like herself again. Once I saw her light shining again, I knew that other children would benefit from having these if they ever had any type of surgery or injury involving their legs.

Lucky for us, my friend was on board with helping me facilitate getting this product out to so many families. We are so thrilled to offer a product that will hopefully bring a little light back into everyone's recovery during such a trying time.

You can check out zipOns™ by befreeco here:

Friday, February 5, 2016

Is Technology Affecting Your Rett Girl's Sleep?

by Megan Nunn

Many of our girls (like ourselves!) are highly motivated and even calmed by devices like iPads and smart phones. I’ll never forget how excited I was when one of Ava’s therapists opened our eyes to how helpful and appropriate these tools can be for our girls. When nothing else motivates our almost three-year-old, it is absolutely amazing the things she will do to watch a movie or play a game on her iPad.

These high-tech tools are not without a price, though. The blue light they emit has been shown to decrease melatonin*, which is needed to regulate sleep. Sleep disturbance is a big concern for Rett girls because they typically already have decreased and sporadic nighttime rest, which contributes to a myriad of problems in the day time, from lethargy to trouble concentrating to mood swings.  Sleep deficits also lower the seizure threshold and can precipitate or exacerbate seizures, which is a huge concern for many of our girls. In addition, chronic exposure to blue light may cause macular degeneration, especially in children.

Fortunately, the effects of blue light can be addressed and minimized with a few quick tweaks to the girls’ normal routines. Keep in mind that these tips also apply to computers, television, and smart devices. 

To minimize sleep disruption:

1. Turn off devices two hours before bedtime. If your daughter needs to use one, choose the smallest device available (such as a phone instead of a tablet).

2. Aim to give the girls time outdoors everyday, especially in the mornings, to assist melatonin production and promote a healthy circadian rhythm.

3. Dim the screen brightness on your smart devices later in the day to help the girls’ bodies prepare to rest. For iOS cell phones or tablets, you can adjust the settings at night from your settings screen. Go to General, then Accessibility, then Invert Colors.

4. Screen shields for your devices may also help and are inexpensive- these can be found online at sites like

5. Try a blue-light minimizing app specific for your device:
6.  More blue-light minimizing products:

We hope you and your families have a happy night’s sleep while benefiting from all of the great technology available to us!

Guest blogger Megan Nunn is a pharmacist and mom to two beautiful girls, Ava (RTT) and Cecelia.  

* Source:
Harvard Health Publications, Harvard Medical School

Friday, January 15, 2016

Using Wrist and Ankle Weights to Address Physical Challenges

by Mary Jane Baniak, DPT

The following blog post is an excerpt from a blog by MightyTykes consulting DPT Mary Jane Baniak. To learn more about how MightyTykes might help your Rett girl and before beginning any exercise regiment, please consult your child’s therapist or physician.

Using wrist and ankle weights as an adjunct to therapy to help address a wide range of issues and challenges in young children. Some examples of conditions more common to girls with Rett Syndrome which weights can help include:

Toe Walking/Gait
Many children walk on their toes or are otherwise unsteady on their feet due to tightness in their heel cords, sensory issues or weakness. Ankle weights can provide children some input and help cue kids to keep their feet flat and encourage a normal walking pattern.

General Weakness and Low Muscle Tone (Hypotonia)
Low muscle tone can cause children to be weak and delayed in gross motor skills, such as rolling, sitting independently, and crawling.  Weights can be used to help build strength, and can be easily worn, with supervision, during routine daily activities.

Tremors/Stereotypic Movements
Neurological and sensory problems often cause tremors or stereotypic movements, unwanted actions that can impair function or simply be an awkward distraction. Weights can add sensory input to arms and legs, helping to decrease unwanted movements. This can be especially helpful in eating.

Mighty Tykes are ankle and wrist weights that are the perfect size and weight for babies, toddlers and kids.  They are very low profile, come in several different weights, are lead free, latex free, waterproof and made in the USA!   Plus, they are SUPER CUTE!  Check them out HERE.

Mary Jane Baniak, DPT is a certified Early Intervention Specialist and a Certified Infant Massage Instructor, and Certified Weight Trainer, working primarily in home- and school-based settings. A married mom to three girls, Dr. Baniak is an experienced race director and ultra-runner and endurance athlete.

Friday, November 20, 2015

7th Annual Rett Girl Holiday Gift Guide

We have so many exciting gift ideas for your special Rett Girl! In this year's Holiday Gift Guide we have tried to cover every age and ability level as well as every budget! 

Bluebee Pals: 
What a cool toy!  Bluebee Pals are plush animals that connect to apps when paired with bluetooth and create interactive toys that "talk!"  They can sing songs, read storybooks and can even be used as a wireless speaker phone!  

Imagine a super cozy fleece wrap that is secured with just a simple velcro closure at the neckline.  The Wrapeaze provides comfort, warmth and style for your Rett Girl without the bulk or hassle of a jacket!  Lots of colors and patterns to choose from.  

An evolutionary tripod for smartphones and tablets that resembles the human body with an unlimited number of positions and holding options.  This tablet holder will go everywhere your Rett Girl goes and will hold at any position she needs!

The FlatBox is a lunchbox that unzips to become the placemat for your lunch!  Protects your Rett Girl from one of the germiest places in school - the cafeteria table AND it’s machine washable! 

Playing with baby dolls with limited hand use is tough! With this baby doll carrier your Rett Girl can carry her baby hands free!

Fun new beauty sponge combining exquisite fragrances with time-release lather, olive oil and botanical extracts to make your Rett Girl's skin glow and her face smile!  It’s the Ultimate spa-at-home experience.

Speaker Creatures:  
These water - resistant, adorable Bluetooth Speakers pair with your Rett Girl's music device and easily suction to the shower wall.  So she can jam even when she's in the bath!  

Makey Makey:
Check out the Makey Makey!!  An invention kit that allows you to turn everyday objects into touchpads and combine them with the Internet!  Just think, you can make a “custom” switch for your Rett Girl using play-doh, or even use bananas to create piano keys! What?! This is so cool! So many different options and there’s also a special needs forum where you can share your ideas or get inspired by others! 

Amazon Smile!
Designate Girl Power 2 Cure as your charity when you purchase through and Girl Power 2 Cure will receive .05% of the proceeds.

Zubits magnetic shoe closures are quite simply the fastest and easiest way to get in and out of your shoes! When the Zubits magnets are separated it's as if you have no shoelaces at all, so you can easily slide into a wide open shoe. Then, just click the magnets together and that's it!  

My Friend Teddy:  
You can bring this adorable stuffed bear to life by downloading the free app and customizing your Rett Girl's specific information, such as favorite characters, food, toys, family name and birthday!  Teddy will incorporate these into his engaging and interactive storytelling.  

Rainbow DazzleMinnie Mouse:  
Magical fashion is at the tip of your Rett Girl's finger with Rainbow Dazzle Minnie! Press the heart on Minnie's hand to activate the magical light-up feature and design Minnie's outfit with the colors of the rainbow. Simply touch Minnie's bow, skirt or blouse to make them magically change color. 

Slipper boot:   
Nothing beats a great pair of slippers! These have a hard sole so their perfect for walking around the house or a quick trip in and out of the car.  Buy a size or two bigger to accommodate AFO’s! 

Bright Beats Playspace: 
This interactive, touch-sensitive light bar features innovative Smart Touch Technology that responds to touch with music, lights, colors, sung songs & much more! 3 ways to play: Piano Play, Dance Party and Learning & Games. It's the ultimate toy for introducing your Rett Girl to colors, numbers, ABCs, music, cause & effect and much more!

Moff Band:  
This comfortable, slap on bracelet is easy to wear and encourages kids to move around with realistic sounds that follow each action. Think about how fun and motivating this could be for your Rett Girl at physical therapy!   

Adorable and fully microwavable!  These soft and furry nocturnal Hootys make the perfect bedtime companion and are the ultimate in functional room decor. They are gently scented with lavender for a perfect night’s sleep. 

Packing Pup:  
The PackingPup is the Ultimate Travel Companion. He is soft and plush, gentle and affectionate and has your Rett Girl's comfort needs in mind. Simply transform the puppy into his u-shape form and voila! Comfort at your beckoning call.Perfect for holiday trips. 

The Rocking Hammock:  
There's nothing quite like kicking back in a hammock, and now your Rett Girl can delight in that comfort in any space! This incredible rocking hammock is compact and lightweight enough to easily fit and move indoors or out. Holds up to 95 pounds!

Aquarium Lamp with Fish: 
Your Rett Girl will be mesmerized by these fish that "swim" in a colorful, lighted seabed.  A moving picture creates the illusion that the water and fish are in motion.   

Ponytail holders with a dangling metal charm secure hair all day without leaving a crease.
Super easy to slip on and off!    

Switch Adapted Spin Art: 
This battery-operated switch-adapted Spin Art set lets your Rett Girl easily create great art using her switch! Includes cool Neon Color Paints and Paper.  

Your Rett Girl will feel tranquil and relaxed, with a new waterfall foot bath! The full bubble action will sooth her soles, while the innovative waterfall will massage the top of her feet and pamper her toes.
Does your Rett Girl love watching movies?  This pocket projector connects via HDMI cable to most smartphones, tablets, computers, video game players, media streaming devices, cameras and more!  It projects images up to 50" diagonal on just about any flat surface.  It even has built in speakers!  

Past Holiday Guides!  
Check out our past Holiday Gift Guides for even more ideas!

Your Rett Girl will never forget the experience of witnessing the metamorphosis of ten caterpillars into beautiful Painted Lady Butterflies. This Giant-Sized Butterfly Habitat has super-see-through mesh perfect for butterfly viewing.

Liberty’s Kids: 
Give your Rett Girl the gift to travel back in time and witness history in the making with Benjamin Franklin’s teenage reporters as they confront the real and physical dangers of the American Revolution. She’ll discover the high points of the American Revolution through this fun and animated educational adventure! 

Orbeez Spa Chair:   
Your Rett Girl can relax by immersing her body in the soothing softness of Orbeez. That’s right she can literally sit in an inflatable lounge chair filled with Orbeez. The Body Spa features soothing vibration and hand pouches to enhance her relaxation.

Zoomer Interactive Puppy: 
Zoomer is back! He's twice as smart, twice as funny and will steal your Rett Girl's heart twice as fast! With voice activation, she can teach him everything a puppy needs to know. Have her use her communication device to call his name and help him learn tricks!

Mechanical Globe: 
The Night'n Day Real Solar Time Rotating Globe is a globe, clock and calendar in one. It shows the time of day and date for any location on earth and lights up to show how day turns to night. Both beautiful and functional!

Mozart Magic Cube: This is a great toy for our Rett Girls!  Wonderful, classical music and with just a touch of a (big) button she can add or subtract different instruments!   

Rett Girl Holiday Guide
Check out lots of fun activities, recipes and tips for surviving the holidays in our latest Rett Girl guide!

GP2C Shop
Add some flower power to your gift selection this year! We've got shirts, hats, blankets, water bottles, and so much more including our annual holiday ornament!

Leave us a comment with your feedback and recommendations! 

From everyone here at Rett Girl and Girl Power 2 Cure we wish you the very Happiest and Healthiest Holiday Season!