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Published by Rett Girl, 2018-04-20 06:36:54

2018 Rett Girl Spring/Summer Magazine

2018 Rett Girl Spring/Summer Magazine

Spring/
Summer
2018

CELEBRATING

Our Rett Boys!

LIFE
ADVENTURES
WITH RETT

by Jenny Tesler

Fresh

RFOeRcTiHpEeSsEAwSOitNh
Annie Smith

THE EVERYTHING RETT SITE

“RETT GIRL MAGAZINE SUMMER 2018” © COPYRIGHT 2018 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

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WELCOME to all of our Rett boys and their families
you have a home with GP2C!

2 SPRING/SUMMER 2018

My family just returned from the Girl Power 2 Cure Disney Happy Spring!
Princess Half Marathon week. This week is so good for my This is my favorite season! Time to venture out again, catch
heart! up with neighbors, take walks, ride bikes, BBQing and
I LOVE to connect with all of the families, both new and everything else that comes with warmer weather and
seasoned. At one event, a Rett sibling approached and sunshine! Life just seems a little easier when you’re not
told me that they have never seen a Rett girl look at their dealing with freezing cold toes, big puffy jackets and icy
momma as much as Brynn looks at me. I have been roads.
reflecting continuously on this statement and realized Spring is a time of renewal and welcoming, which makes it
how strong our bond is. I LOVE my girl so much, and wish I a perfect time to highlight some very special members of
could hear the words “I LOVE YOU” just once. Every parent our family here at GP2C, our Rett boys! Our girls are one in
wishes they could hear their non-verbal child’s voice, 10,000, but our boys are 1 in-a-million, and they deserve to
right? Then, I realized she tells me that every day. She tells be recognized and celebrated!
me with her eyes and with her smile. She tells me with her Thinking back to when my now 13-year-old daughter was
own heart. diagnosed, I remember the shock, the sadness and the
loneliness when I realized how rare our little girl was. I
Last night I sat on Brynn’s bed as she slept soundly, her can’t imagine that loneliness magnified to a level that our
body in a beautiful rhythm of deep and peaceful breaths. I families with boys must feel. We want them all to know
laid my hand on her heart and allowed myself to be swept that they are welcome and have a home here at GP2C. We
away by its beating. And within that melody, I heard my are ready to stand beside you and fight for education,
daughter’s voice as she spoke from the depth of her heart resources, and treatments that your boys deserve just as
to mine. much as our girls!
It was the message my weary heart longed to hear…Thank We hope that this magazine, dedicated to our boys, sheds
you, Mommy, for the long days and even longer nights you light on this very special group. Also, we hope that you find
spend caring for me, fighting for me, providing for me, this season to be a great time to foster new relationships,
loving me. I have seen every tear you have cried and every new goals, new joy and especially new hope! We had all
wrinkle that has come, and for that I am grateful. I am those things in mind when putting this edition together,
grateful for the strong love you have for me, for the ways and it’s our hope that with each page you will see some-
you choose to protect me, for every prayer you’ve prayed thing new that sparks your interest and benefits you, your
for me, and for all of the times you have spoken up for me. Rett child and your family.
Thank you for trading in all the dreams you once had for
bigger and better dreams that we can live out together. Bridget MacDonald
Thank you for advocating and fighting for Rett Syndrome. Rett Girl Coordinator
You are blessed, Mommy, and you have shown me many [email protected]
things in life. So, I give you the reward you have earned….
I give you my heart.
Power On,
Kristin Hileman
[email protected]

SPRING/SUMMER 2018 3

Summer

Magazine

“No matter how long the winter, spring is sure to follow.”

Six Fabulous Categories in this
issue of the RettGirl Magazine!

5 Activities Life Adventures with Rett

12 Recipes for the Season Annie Smith’s Springtime Recipes

19 Products Must-have Items for The Season

22 EDUCATION It’s Never Too Late!

25 Health and Wellness Welcoming Our Rett Boys
30 Girl Power 2 Cure What’s Going On And How To
Get Involved

4 SPRING/SUMMER 2018

SPRING/
Summer
Activities

WILL IT BE EASY? NOPE. WILL IT BE WORTH IT? YES!

SPRING/SUMMER 2018 5

Try Something New!

3D DIY Family Tree

get Creative

Your Rett child is going to LOVE assisting you with this 3D family tree! This is an easy project, and with so
many variations, each one will be a unique keepsake! Check out the next page for communication page-sets
that you can either print or download to Communicator 5 software.

Instructions: Check out the blog post tutorial
1 Place a block of floral foam in a decorative pot. Insert branches at ehow.com

in the foam to hold them steady.

2 Roll some moss into balls and push the moss balls into the pot
to cover the floral foam. Packing the moss tightly in the pot will
help steady the branches.

3 Trim photos so they are the same size as the wood discs. Apply
a layer of decoupage glue to the wood, place photos on top, and
then apply another layer of decoupage glue on top of the
photos to seal.

4 Once photos are dry, place them on a piece of felt and draw a
flower petal outline around them. Cut out the flower shape and
hot glue the felt to the back of the wood disc. Vary the colors of
the felt for each family member.

5 On the back side where the felt is applied, hot glue clothespins
and then clip the flowers to the branches.

6 For a finishing touch, hot glue a ribbon around the pot. Then cut
out a label from card stock, write your family's name on it, and
glue the label on top of the ribbon. Your creative family tree is
complete!

6 SPRING/SUMMER 2018

Communicator Page Sets

Susan Norwell, M.A.

!

To access instructions and Communicator page-set for this activity, go to rettuniversity.org

Library > Resources > Free Resources.

!

SPRING/SUMMER 2018 7

“I love you!”
“Girl power!”

“Let’s go!”

Say it with your eyes using the Tobii Dynavox I-Series+

The Tobii Dynavox I-Series+, featuring the world’s #1 eye tracker, is specifically designed for individuals who rely on
augmentative and alternative communication to make their voices heard, like those with Rett Syndrome. Discover the

power of the I-Series+ and experience:

• A modern yet durable design • Text messaging to say HI to family and friends
• Integrated eye tracker for optimal results • Flexible pagesets for communication growth
• Booming speakers to be heard anywhere, anytime • Batteries that last and last
• Access to social media sites to stay connected

To learn more, visit tobiidynavox.com and contact your local Tobii Dynavox sales consultant. Funding options available.

8 SPRING/SUMMER 2018 Power to be You

Get Creative

DIY Fun

Try something new

Marbled Paperweight

• White paint
• Nail polish
• A bowl of water
This is all you need to transform an ordinary rock into a beautiful
marbled paperweight! Get your Rett child involved by letting them
hunt outside for the perfect rock, then let them choose the nail
polish colors. Check out the step-by-step process by

Kiwico.com

Bottle Print Flowers

Gather some empty plastic bottles, paint, a tray and some paper
and make these great bottle print flowers. Using hand-over-hand
with the bottles allows your Rett child to be part of the printing
process! Full instructions at:

messforless.net

Garden Markers

Planning a spring garden with your Rett kiddo? Take it one step further by
having them help you create these garden markers for the plants/herbs
or veggies you plant. First head outside for a rock hunt, then head to your
local craft store for Patio Paint and glass paint markers. Check out
craftsbyamanda.com for full instructions! These will look so cute in the
garden!

Suncatchers

Here’s your chance to use all those broken crayons! You’ll also need some
wax paper, scissors, an iron and a grater. This craft is perfect for allowing
your Rett child to get creative with both colors AND shapes! Check out the
full instructions at:

Buggyandbuddy.com

SPRING/SUMMER 2018 9

Moving Past the Comfort Zone

Life Adventures with Rett

Jenny Tesler, Rett mom to Magnolia

If you are like me, you love being active. Going to the park, going for hikes, bike

rides, boating, snowboarding, skiing, waterskiing, skateboarding, surfing, rock Jenny Tesler is a writer, blogger and active
climbing, even jumping out of airplanes or pretend jumping out of airplanes. In advocate for her daughter Magnolia, living
my life, every single one of these things is an adventure. And that’s ok because with Rett Syndrome. Born and raised in San
life should be an adventure.
Antonio, TX, Jenny now lives in Los

When Magnolia was diagnosed with Rett Syndrome, I grieved immensely about Angeles, CA with her husband AJ and their
all the things she wouldn’t be able to do, the life she could have had, and two children. You can find her writing
everything in between. Rett was a hard diagnosis to wrap my head around. I about her family’s life living with Rett
decided to make a choice – not to give up. I woke up one day, months after she
was diagnosed and told my husband, no matter what, if there is a cure or not, Syndrome at magnoliashope.com. Besides
Magnolia will have a full life. Then I made a promise to her and myself; she will her family, her favorite things in life are
have more fun than pain. We don’t have any control over what Rett will do to her,
but we do have control over what we do with her. going for hikes, eating tacos and yoga. You
can follow her on
@jennytesler
or

Choosing to have fun and living a life with Rett Syndrome is tough. At first, I magnoliashope

wouldn’t miss any therapies. We scheduled everything in our lives around her

therapies. I was so panicked about Rett Syndrome’s “Use it or lose it” diagnosis

that the absolute fear of losing abilities was crippling my mind. We pushed her hard, but she didn’t just need therapy for her body, she

also needed therapy for her spirit. Kids want to run, jump and play. They want to have adventures. They want to feel safe, but also to

explore their limits. It was our job to do that for her and with her. As a family, we needed to figure this out. We wanted to push her to her

limits, which meant pushing ourselves out of our comfort zones. We needed to figure out how to adapt adventures to her.

That was the key for us. We just needed to choose our adventure
and then adapt it for our daughter. Magnolia is still ambulatory,
but she does tire easily, some days sooner than others. We love
to go hiking, and so does she. It is a great work out for her, and we
push her to go a little further each time, but we also understand
her limits. We choose smaller hills for her to climb, and we also
carry her on our backs with the help of a backpack carrier when
she tires. It’s quite the workout for us as well.

The more we do with her, the more she wants to do as well. She
has gotten to be courageous and almost too adventurous. Her
favorite things to try are sports that are a little bit more extreme.
She wants to surf, so we bought a wet suit and have given her surf
lessons, with extra safety instructors. She wants to skate board,
so we bought the skate board, and she really wants to learn. We
are still trying to figure out how to fully adapt the skate board,

10 SPRING/SUMMER 2018

but she loves to stand on it and balance. Lately, she has been experience. Her surf lessons in La Jolla were with Surf Divas. We
asking to go rock climbing. Neither of us are rock climbers, but we called and explained all of Maggie’s handicaps, and they
are willing to learn. It’s going to take some skill and maneuvering provided the extra instructors and safety plan for Maggie’s
to help her climb, but I know we can do it. I’ve learned that if she individual needs. Her soccer team is run by a VIP group, through
is motivated to try, then I’m not standing in her way. the AYSO, that makes sure she is a part of the team. Gymnastics
is through Leaps and Boundz. She previously took dance class
The real trick for making any of these adventures successful is through Ballet for All Kids. And while Los Angeles may be more
preparation. My husband likes to do things on a whim, and I like progressive than some other cities, you need not consider your
to make him feel we can, so I am always ready to quickly pack a daughter or son’s disability as a hindrance to their experiences. A
bag of grapes, granola bars and waters. Being prepared with little Googling and some extra preparation will insure that your
snacks, basic necessities and a small emergency kit (which kid can do more than you thought was possible.
includes emergency seizure meds) is a priority for us. Beyond
that, I have spent countless hours investigating what is possible, Okay, now you are ready. So, go have fun! Show your kid
and we have learned that most adventures are adaptable. Many something they never thought they’d be able to do. You’ll both
of them will have companies that have trained for assisting be grateful for the experience. And while with Rett Syndrome
special needs kids to achieve their goals. you never know what may happen, as long as you are prepared to
change plans and to be adaptable, it will be great. Just make
When we went skiing in Mammoth, Maggie was assisted by a memories.
great group called Disabled Sports Eastern Sierra who had all the
equipment and expertise to make sure she had an incredible

Helping Others Recover the Power to Move

To learn more, go to www.neurologicalrecoverycenter.com

SPRING/SUMMER 2018 11

sPRING/
summer
R e c ip e s

FOOD IS THE INGREDIENT THAT BINDS US TOGETHER

12 SPRING/SUMMER 2018

A h e a lt h y a lt e r n at i v e

Blended Diet

Where to Start

In our last issue (Holiday 2017), we introduced you to blended diets, and how they Tips
may benefit your Rett child. We believe that fresh, whole foods are far superior to
anything that is processed and put in a can. If you’re interested in starting a blended 1 Always check with your Rett
diet, then this information is for you! child’s doctor before changing her
diet, but don't be intimidated – if
Starting is the hardest part! Don't feel as though you have to go you see a benefit to transitioning
“all-in”, and try not to get overwhelmed. Starting a blended diet is a her to a blended diet, make sure
you voice it.
process -- a very slow, gradual process. You will learn as you go.
2 Seek the advice of a registered
The very first thing you need to think about is what your Rett child needs. Make a list dietitian. If nothing else, for peace
of any intolerances or allergies. Next, decide whether your Rett child needs to of mind that you are including all
maintain or increase her weight. of the nutrients that your Rett
Finally, do a little research into a simple, balanced diet and an approximate calorie child needs.
amount. This is the step that scares a lot of people, but think of it this way: it's not so
scary to prepare a balanced meal for an oral eater, and you typically don't spend too 3 Remember water! You can find
much time counting the calories on the plates of your other family members, right? general guidelines for hydration
So, just relax and don't overthink it. Ask your child’s doctor for a referral to a needs at
registered dietitian who may be able to start you out on the right foot if you want FeedingTubeAwareness.com and
some support. However, be aware that some health care professionals are not in can add the proper amount of
favor of blended diets. If this is the case, and you are met with resistance or pressure water to each feed or give water
to continue with formula, please remember that you do not need anyone’s 30 minutes before each feed.
permission to feed your child food!
There are some great online resources for determining calorie levels and 4 Invest in a good quality blender
macronutrients. Cronometer.com is a great app that helps you count calories and (Blendtec or Vitamix are good
provides nutritional information for homemade blends. ChooseMyPlate.gov has a choices). These blenders have the
calorie checklist that helps you determine the number of calories your child should ability to liquefy food, so you
be consuming, and how many servings of each food group they need to reach that don't need to strain your blend
calorie goal. before administering through the
We're here to give you a starting point and resources to make an informed decision tube.
about blending. If you missed the article about blended diet benefits, go to
RettGirl.org and review our Holiday 2017 magazine. Stay tuned for our Fall 2018 5 If you are planning on overnight
magazine where we will continue our blended series and explore how to transition pump feeds you will want to be
to a blended diet. very cautious about the food
spoiling. Try the Koala by Feeding
Essentials to keep food cool
throughout the night.

SPRING/SUMMER 2018 13

Common ingredients in standard feeding tube formulas:

CORN SYRUP FRUIT JUICE CONCENTRATE
SUNFLOWER OIL AGAVE

CORN OIL

CANOLA OIL SUCRALOSE
BROWN RICE SYRUP
SOY PROTEIN ISOLATE
SUGAR CARRAGEENAN
SOY LECITHIN
FRUCTOOLIGOSACCHARIDES
1 4 S P R I N G / S U M M E RSO2D0I1U8M CASEINATE CORN MALTODEXTRIN

SPRING/SUMMER 2018 15

Tas t e s o f t h e S e as o n

Annie’s Favorite Recipes

Perfect recipes everyone will love

As a kid, I couldn't wait for Summer – for the corn! White corn was my favorite, and it's kind of impossible
to mess up… so simple and delicious. If you want to mix in some heirloom cherry tomatoes and diced
avocado... go for it! Recipes are a springboard for your imagination... a template on which to place your

own thumb print and make it yours. Enjoy.

Mexican Street Corn Salad – from seriousseats.com

Ingredients

ServingS PREP TIME TOTAL TIME • 2 tablespoons vegetable oil
• 4 ears fresh corn, shucked, kernels
4 15 15
removed (about 3 cups fresh corn
PEOPLE MIN MIN kernels)
• Kosher salt
DIRECTIONS • 2 tablespoons mayonnaise
• 2 ounces feta or cotija cheese, finely
1. Heat oil in a large non-stick skillet or wok over high heat until crumbled
shimmering. Add corn kernels, season to taste with salt, toss once or • 1/2 cup finely sliced scallion greens
twice, and cook without moving until charred on one side (about 2 • 1/2 cup fresh cilantro leaves, finely
chopped
• 1 jalapeño pepper, seeded and
stemmed, finely chopped
• 1 to 2 medium cloves garlic, pressed
or minced on a microplane grater
(about 1 to 2 teaspoons)
• 1 tablespoon fresh lime juice
• Chili powder or hot chili flakes, to
taste

minutes). Toss corn, stir, and repeat until charred on second side,

about 2 minutes longer. Continue tossing and charring until well charred all over, about 10 minutes total. Transfer to

a large bowl.

2. Add mayonnaise, cheese, scallions, cilantro, jalapeño, garlic, lime juice, and chili powder and toss to combine. Adjust

seasoning with salt and more chili powder to taste. Serve immediately.

16 SPRING/SUMMER 2018

This recipe comes from a woman who is a legend within the BBQ competition world. She received a perfect
score at the Jack Daniels Championship... which is like scoring 1600 on your SAT! Make these ribs… they are
ahhh-mazing.

Lip Smacking Ribs – from divaq.ca

Ingredients
• 2 racks St. Louis Cut ribs
• 2 tablespoons yellow mustard
• ¾ cup BBQ Rub

For the foil wrap:
• ½ cup apple juice
• 1 cup brown sugar
• 4 tablespoons hot sauce
• 1 cup apple juice (reserved for

spray bottle)
• 1 ½ cups BBQ sauce

ServingS PREP TIME TOTAL TIME

4-5 1 6

PEOPLE HOURS HOURS

DIRECTIONS

1. Preheat grill for indirect cooking at 250°F, and then rinse ribs under cool water and pat dry.
2. Pull membrane from bone side of ribs. To remove membrane, insert finger under membrane in middle of rack and work a

section loose. Grip membrane with paper towel and peel off.
3. Thinly coat ribs with yellow mustard, and rub each rack of ribs with 3-4 tablespoons of BBQ rub. Set aside for 30 minutes to

allow the rub to penetrate ribs.
4. Place 1 cup (large handful) of hickory wood chips into a smoker box or packet made from heavy duty foil (pierced with holes

to allow smoke to come out).
5. Place ribs on unlit side of grill, meat side up. Close lid.
6. After 1 hour, open grill and spritz meat with spray bottle filled with apple juice. Replenish smoker box and refill with an

additional 1 cup wood chips or replace packet filled with wood chips. Close lid. Repeat this step after one additional hour.
7. After 3 hours, remove ribs from grill. Lay out a large piece of foil 2 ½ times length of ribs.
8. Fold over to create two layers. Place ribs on foil meat side down. Pour ¼ cup apple juice over ribs. Crumble ½ cup brown sugar

over ribs.
9. Sprinkle 2 tablespoons hot sauce on ribs. Seal foil package tightly to ensure juices stay in. Return ribs to grill making sure they

are bone side down.
10. After ¾ to 1 hour in foil, check for tenderness. Gently lift ribs to check if meat starts to crack and split. Keep checking every 15

minutes until they are tender to your preference.
11. CAREFULLY take ribs out of foil and place them on a baking sheet, discarding the juices.
12. Increase grill temperature to 300°F. Brush each side of ribs with your favorite BBQ sauce.
13. Return ribs to grill directly to set sauce and caramelize sugars. Watch them closely, rotating and flipping the racks after 5-10

minutes.
14. Take ribs off cooker and let them rest for 10 minutes.Then, slice cleanly between each set of bones by cutting the ribs meat

side down. Serve with additional BBQ sauce on the side.
15. Depending on rib weight, cook time can vary from 4-6 hours.

SPRING/SUMMER 2018 17

I love this salad. It's easy, delicious, and great to have something clean and crisp to break up the decadence
of your holiday menu. I like to add a dash of truffle oil because well, I just can't leave anything alone!

Strawberry Granita – from DavidLebovitz.com

Ingredients
• 1 pound (450g) strawberries,

rinsed and hulled
• 3 tablespoons (45g) sugar
• 1/2 cup (125ml) water

Optional
• 1 teaspoon fresh lemon juice

ServingS PREP TIME TOTAL TIME

6 1 15 4 15

PEOPLE HOURS MIN HOURS MIN

DIRECTIONS

1. Slice the berries into pieces. Toss the strawberries with the sugar and let stand for at least one hour at room temperature, or up
to four hours. The strawberries will be very juicy and a lovely red color.

2. Place a non-reactive shallow metal or glass tray in the freezer (a long, rectangular lasagna pan works perfectly, but you can
improvise).

3. After one hour, puree the strawberries and their juices with the water in a blender. Add a squirt of fresh lemon juice if desired.
At this point, if you want to strain out any seeds, you can (I do).

4. Pour the mixture into a shallow pan and place in the freezer. Check after 30 minutes. As the mixture begins to freeze, use a fork
to scrape the frozen puree around the edges into the center. Return to freezer.

5. Check the granita every 30 minutes, and scrape again as before, perhaps with a bit more vigor as the mixture hardens. It should
take about 2 hours of freezing and scraping to finish completely.

I want to wish you and your family a very Got questions about recipes or
happy, healthy summer! blended diets? Contact Annie
at annie@hangryhousewife
Cheers!
com
Annie Folow Annie on instagram:

hangry housewife

18 SPRING/SUMMER 2018

sPRING/
summer
Pro ducts

TODAY IS THE PERFECT DAY FOR A PERFECT DAY!

SPRING/SUMMER 2018 19

Best Spring Products

Our Top List

Look what we found!

RETT 1Under the Weather Pods
GIRL.ORG! Constructed of durable steel wire, water & wind resistant
polyester and cold-treated clear PVC. These easy pop-up and
Search all of these products on our

website with links to buy!

Fingerling Monkey fold-down personal pods are super-high quality and will
keep your Rett child enjoying the outdoors no matter what
These adorable baby monkeys are curious the weather brings! The XL will nicely accommodate a
wheelchair.
about the world around them – starting with
Arkon Mounts
your Rett kiddo! These interactive pets love to
These mounts are no joke! Professional grade,
3hang onto your finger, blink their eyes, turn and the largest assortment so there’s sure to
be something that will be perfect for
their heads, blow kisses, swing by their tails, mounting your Rett kiddos tablets, phones
and more!
and talk in monkey babble!
Whally Board
2Third Kind Lights
Whether for sitting, standing, or any position
Beautifully powerful light systems for any
in-between, Weplay’sWhally Board is an
activity, these lights are not only fun, but can
ergonomically designed balance board that is
4prevent tragedy by making the user visible up

to a mile away! Great accessory for your Rett

5child’s wheelchair, jogging stroller or bike!
- perfect for incorporating a little fun into your

Rett child’s therapy time!

20 SPRING/SUMMER 2018

ST Y L I N G Aqua Ring Float

Functional Styles for Perfect for a day in the pool with your Rett
child, this device will help them remain
S P R I N Gy o u r R e t t K i d d o upright while working on assisted walking
in the pool! Comes in different diameters
this season! and has an attached, height-adjustable

6 meshseat.
Cooling seat cushion
armbraces.com
Use this on wheelchairs, strollers, car
Seriously cute, handmade armbraces in bright, fun
7seats, or anywhere your Rett child may be
patterns and colors for everyday use and special
sitting to keep them from over-heating!
occasions!
-
Snuggle Sheet
8Swimsters Swim Brief
Give your Rett kiddo the gift of a
Super cute, discrete and
effective! These reusable swim good night’s sleep with these gentle
diapers are a must this summer!
compression sheets!
910-

SPRING/SUMMER 2018 21

sPRING/
summer
Educatio n

NEVER STOP LEARNING BECAUSE LIFE NEVER STOPS TEACHING!

22 SPRING/SUMMER 2018

Mindy Pearlman – It’s Never Too Late

By Susan Norwell

Mindy Proves … It’s Never Too Late! around her. I sat Mindy in front of the Tobii Dynavox iSeries
and also placed Yes/No symbols in front of her. As we
I am so excited to introduce you to a wonderful woman that I chit-chatted, I used the Yes/No to agree or disagree with her
have had the pleasure to get to know in the last year and a parents, and I modeled language onto the iSeries. That first
half. Mindy Pearlman is a 47-year-old woman with Rett session, Mindy did not once use the iSeries to say anything,
Syndrome. She was diagnosed at a time when we only had a but she actively eye-pointed to the Yes/No symbols as she
clinical diagnosis. It was a time when little was known about agreed or disagreed with things I said. She also demonstrat-
Rett Syndrome, and what was thought to be known did not ed a very strong look to me for “yes” or agreement. She
give Mindy or older women like her a path to an education or agreed adamantly when I said she most likely had lots of
communication. So, I know it was with much anxiety that ideas in her head with no way to get them out. She told us
Mindy walked into my office that first time on a day in October “no” very clearly when mom tried to encourage her to use
of 2016. I am sure her mother and her step-father were also a the iSeries to tell us something. I knew from “first time”
bit nervous. After all, for years mom had no one to help her meetings with other older women that she would come to
debunk the terrible prognosis she had been given at diagno- use the eye-gaze device in her own time and in her own
sis. But little by little, the work many had done to enlighten way. My job was to form a relationship and talk with Mindy
the world about the capabilities of individuals with Rett and wait and pause to see her responses. She did not disap-
Syndrome began to surface for her. Mindy’s step-father, a point. Mindy had clear opinions, a sense of humor (laughed
major force in his own right in terms of employment for those during all the right moments) and was very engaged for
with developmental disabilities, just had that “feeling” that those thirty minutes. And, when she left, I started thinking
there was more to Mindy than most would admit. And so, I about Mindy and how we could move forward.
was blessed on that day Mindy and I began our relationship.
Mindy and I work together about twice a month. She comes
Her first visit was fairly short. I think she was able to stay at in willingly and is more relaxed and confident every time.
the table for 30 minutes before she bolted upright and She is utilizing the iSeries to make comments, ask for things,
walked to the door. But that half-hour opened a huge door direct my actions, negate, affirm, and spell! Yep, I said spell.
into just how much Mindy was understanding about the world

SPRING/SUMMER 2018 23

like. I then showed her how the “confirmation and negation”
page worked so when she chooses a letter, she could “keep
it” or “not” and automatically go back to the keyboard. I
offered letters to her, always including one or two incorrect
ones, and she consistently negated the ones not in her
name and accepted the ones that were.

She does all this in her timing and in her own style. She Mindy has been paying attention the last 47 years. She has
consistently uses all forms of her communication (eye-point- noticed how her name is spelled and how people agree and
ing, her affect, pointing, Yes/No symbols, and iSeries), and I disagree. She has listened intently to what others have said
could write for hours about all she is figuring out about and has been reacting and communicating in the best ways
communicating, but three sessions stand out in my mind. she had access to at the time. She has developed her own
opinions as to what is funny, scary, anxiety provoking and
It was maybe the 2nd or 3rd time we met, and she was really calming. She has sized people up quickly and has developed
consistent in using her Yes/No symbols and agreeing and an innate sense of when people believe in her. And now, she
disagreeing with what everyone was saying. She decided, has a way to express herself and learn more fully. We are on
after we gave her options, that she would like to call her the way to getting her the access to communication and
step-father Pops. Well, Pops was praising Mindy about all she language she deserves, and I have no doubt, she has much,
was learning and doing, and Mindy got very quiet, looked much to say and share. She is inspiring me to figure out a
intently at the iSeries and said, “I love you” and looked right at way that she can learn to read and write, and I will approach
him. I think we were all teary-eyed. her adult program to suggest literacy training for her and
the other complex adults they serve. I am so very thankful
A few sessions later, Mindy’s sister came to our session and let that through her grace, she’s so patiently waited all these
us know that mom wouldn’t be there as she was in the emer- years and will now have many years to share everything
gency room with some medical concerns. Mindy was visibly about this life she wants.Mindy is real proof, it is never too
agitated, and as I tried to engage her in conversation and late.
interaction, she just couldn’t concentrate. She finally navigat-
ed to the Quick Phrases page in SonoFlex and said, “I am sorry.
I am afraid.” When I connected this to her mom being in the
emergency room she quickly looked to the “Yes.” WOW!!!
Here she is, after years of having no way to communicate, she
is telling us how she feels and what is bothering her and
found the language she needed so I could understand her.
And of significant matter, she is only using the device twice a
month.

This last week Mindy put the icing on the proverbial cake. She
navigated from SonoFlex to the keyboard, and I showed her
that she could choose an “m” and write her name if she would

24 SPRING/SUMMER 2018

sPRING/
a shuamndmWerellness

DECIDE TO BE HAPPY, IT'S GOOD FOR YOUR HEALTH

SPRING/SUMMER 2018 25

T e x as C h i l d r e n ’ s H o s p i ta l

Vacations: Reinvigorating or exhausting?

Rebecca J. Schultz Ph.D., RN, CPNP, Pediatric Nurse Practitioner
for the Comprehensive Epilepsy Program and Blue Bird Circle

Rett Center at Texas Children’s Hospital

With Spring Break and Summer quickly approaching, families will soon be
heading off to their favorite vacation spots. We look forward to these
getaways as they provide a break in the everyday demands of work and
school. Whether this time away is used as an opportunity to visit family,
explore new places, go to an amusement park or a sunny beach, vacations
offer excitement, education and a strengthening of family bonds.

As a member of But, what if you are the parent of a child with a disability? Traveling may
the Blue Bird Circle sometimes seem more like running a marathon than a relaxing vacation.
Clinic for Pediatric However, with preparation, travel is very doable and can be just as
Neurology at Texas rewarding.
Children’s Hospital,
1. Planning is Essential!
I work with Rett
families every day. • Ask yourself these questions: How long will you be away from home? Are
One thing I believe you traveling by car or plane? What are some possible emergencies that
that every parent of could arise?

a child with Rett • Map out your trip to choose destinations and rest stops that can
Syndrome should accommodate your child’s unique needs.

know is the • If you are traveling by plane, remember to call the airport ahead of time
importance of a and check the Transportation Security Administration’s website for
positive learning specific rules and guidelines on traveling with a special needs child.
Airlines often have many accommodations available.
environment.
2. Be Extra Early

• Any travel, whether by car, bus, train or plane, requires good timing. When
traveling with your Rett child, it can often take extra time to get places,
pass through security checkpoints or board.

• Allow for plenty of extra time to get wheelchairs and other equipment
loaded into vehicles or onto planes.

• Remember, if traveling by plane, that airport security lines are always a
gamble. Save yourself some stress by planning for an extra-early airport
arrival time.

26 SPRING/SUMMER 2018

3. Medical Needs

• Request a letter from your health care provider at least two weeks in
advance. This letter should list all of your child’s health care
conditions, medications and any specific special needs. Having this
can be very helpful as you travel through security check-points,
particularly if your child has any medically-implanted devices, or if
they are on a special diet that requires extra formula or special foods.

• Don’t just bring enough medication for the trip. Pack extra in case you
encounter delays, or any is lost.

• Keep your medications with you! If you are traveling by air, or with
checked baggage anywhere, don’t pack any medications in your
luggage. In the case of lost luggage, you don’t want to risk being
without important medications.

• Remember to take all medications on schedule, especially if you are traveling to new time zones. This is particularly important
if your child has seizures, as missing a dose of medication is the number one reason for breakthrough seizures.

• Research the health care resources at your destination. If you are traveling to a city or resort, access to a pharmacy may be
easy. However, if you are traveling to a rural area, these resources may not be easily accessed. Plan ahead and identify the
nearest hospital and pharmacy in case of emergencies.

4. Don’t be Shy!

• For those with disabilities, many amusement parks and travel
destinations offer special passes and accommodations. Make
sure to visit the Guest Center or concierge to find out if your child
is eligible. At amusement parks, in particular, these passes can
save you valuable time waiting in long lines and help keep
everyone happy and harmonious.

• No matter what city, state or country you are visiting, do not be
afraid to speak up at restaurants regarding any special dietary
needs your child has. The chef is often more than willing to be
flexible and help make a meal delicious and nutritious for your
child.

Although traveling with your Rett child may sometimes seem daunting, it is definitely doable and can be a fun, exciting
experience for the whole family. Overall, although there is extra work required in planning these trips, they ultimately
offer your child the chance to meet new people, see and experience different cultures and,
most of all, HAVE FUN!

SPRING/SUMMER 2018 27

Rett Boys!

By Jennifer Ballard, mom to Rett boy AJ and GP2C Power Team Member

My name is Jennifer Ballard. I am married to Brian and have two
beautiful children; our son, Alexander James (who we call AJ), is 7 years
old and our spunky daughter Brianna, who is 4 years old. I am a music
teacher, and my husband is a retail manager. We have lived in the
Albany, NY area for the past 12 years.

Our son was diagnosed with Rett Syndrome when he was about 18

months old. I was at work when I received the phone call with the news,

and I remember talking to the genetic counselor and asking what the

next step would be, now that we had an official diagnosis. She said, “Well, I don’t know, and

honestly, I have never seen this in a boy before. I am not sure what to tell you to do next...but I think you should meet with

the palliative care team and discuss your options.”

I was very confused. How could a genetic counselor not know

what to do? So, the first thing I did was jump on the internet

and start researching. Every single thing I read was

devastating. I ended up leaving work early that day. I needed

to know more; there had to be someone else out there that

was like him, like us, but I found no one. Over the next few

months we aggressively searched for more. We met with

specialists in Boston, and we were told we were lucky, to

keep doing whatever it is that we are doing, and we were sent

on our way. I felt like we didn’t matter.

Then, I met another mom on Facebook whose son had Rett Syndrome, but it was not the same genetic mutation as our son.
How could this be? I soon discovered there are a lot of boys out there with no voice; some with deletions, some with
duplication, triplication, and even quadruplication of the X-chromosome. I kept finding more and more. Some stories are
similar, and some are very different. Some boys pass in utero, and others are living into their 20’s. We need more – more
support, more research, more voice.

I am hoping that through my involvement with GP2C, we can take steps and begin to acknowledge our boys, and how rare
but similar they really are; and also, to give a voice, not only to the boys, but to the families who have been told “there’s
nothing that can be done,” or “I don’t know” so many times. I believe that with increased genetic testing, we will find more
boys diagnosed, and families looking for answers. I feel that being involved with an established community like GP2C, we
will be able to work together and bring a louder voice to our boys.

In the end, the moms of boys are no different than the moms of girls affected with Rett Syndrome. We want answers, and
more importantly, we want a cure.

28 SPRING/SUMMER 2018

Rett Boys

Meet Colin

Rett mom Kate Ferdinandsen

Colin is a little different than other males with Rett Syndrome. He has typical Rett Syndrome but also has mosaicism. He is a healthy,
ambulatory, ten-year-old�boy who can not use his voice to communicate. Colin had full u  se of his hands until around twenty months of
age. While he was never able to speak, he walked up and down stairs, ladders, etc. until the regression occurred shortly before his second
birthday. It was very hard at that point because he withdrew from us and seemed to be frightened all of the time. He was suffering, and
we couldn't help him.

We took Colin to a well-known hospital in New York City where he was diagnosed with non-verbal autism at the age of three. He went to
a pre-school for children with ASD, but the interventions did not help him. We were at a loss. Eventually, I took him to the Center for
Autism and the Developing Brain in White Plains, NY, for a detailed assessment. They evaluated him and recommended genetic testing for
Rett Syndrome. I remember thinking that they had to be wrong because males cannot have Rett Syndrome. Nevertheless, at the age of six,
Colin was tested and diagnosed with Rett Syndrome. I was stunned.
The autism community  had been a very supportive community, but in 2014 there was�a  lmost no information and very little support for
males with Rett Syndrome to be found. It was as if they didn’t exist. Everything I read was about females. I remember thinking that he was
completely alone in the world. The first time I made contact with two other mothers with Rett sons, I felt the isolation lift. We created an
online support group which has grown over the years. We support each other and share ideas, intervention suggestions and questions. I
am so grateful for the other parents in the group, and today, we have families from all over the world. I think that there are around fifty
boys and one young man in the group today.

Sadly, we have lost several precious, beautiful little boys over the past one and a half years, and every one of them deserved a chance to
live and thrive. I think about their parents, their siblings and their struggles often. I do know, though, having the support of the Rett
community has meant so much to us. We travel this life journey together, make all the real moments count and work together to give our
kids the life they deserve. Isn’t that what we all work hard to do as parents? And that is exactly what we will do for Colin and all of our
children.

Colin lives with his Mom-Katie,
Dad-Bill, Sister-Keelin and
Brothers-Aidan & John in

Westchester County, NY. Bill is a
professional engineer, and mom is a
social worker. Colin is 10 years old,

attends school and enjoys being
with his family.

SPRING/SUMMER 2018 29

spring/
summer

GP2C

GET UP, GET OUT, GET INVOLVED

30 SPRING/SUMMER 2018

SPRING/SUMMER 2018 31

MoreThan Hope

By Kevin Pierce, GP2C Director of Development

It’s More Than Just Hope!

I remember vividly the day we received Blakely’s Rett
diagnosis. It was late in the afternoon (a Friday I think),
and I was home snoozing on the couch. My wife Sonja
came home, in tears, and broke the news to me. The next
48 hours are really just a blur, but being forever the
engineer, I dove into a Google marathon. I built rockets
and spaceships… I can solve this problem – it’s what I do.

I admit, I am a certified information junkie, with
informal“Google PhDs” in multiple subject areas. I
trolled every Rett site, read every blog, and scoured
PubMed for the latest research. I took copious notes, correlated all the data, and drew my conclusions… in technical terms – it
wasn’t good … this was going to be a battle. There was no cure, and even the most advanced research was still stuck in the lab
– mostly with mice as the subjects. Adrian Bird’s mouse reversal was the latest, greatest, most encouraging piece, but how
would they make it work in humans? Still a big question mark.It was all raw and preliminary – maybe we can edit the gene,
maybe we can flip-on the inactive X, maybe we can replace the MECP2 protein… lots and lots of maybes… but still hope.

Fast forward to today, and as most of you are likely aware, our partners at the Rett SyndromeResearch Trust and AveXis, a
biotechnology company, are working together to develop gene editing protocols for Rett Syndrome – theoretically, a cure. This
is not the only research path being pursued by our RSRT friends, but it is certainly high on my watch-list.

On February 27th of this year, AveXis held their quarterly conference call to report financial status and developmental progress
on three key disease treatment programs, all similar due to their mono-genetic (single mutated gene) attributes:

1 Their human trial regarding Spinal Muscular Atrophy (SMA) gene therapy protocols

2 Their laboratory progress on a very similar gene therapy protocol for Rett Syndrome

3 Similar reporting on gene therapy protocols for Amyotrophic Lateral Sclerosis (ALS-SOD1)

The news is positive… very positive. SMA is a really tough condition, usually resulting in death at a very young age for those
diagnosed with it. But thankfully,the SMA trials in human subjects are progressing, and results are (very) encouraging. The
delivery protocols are working, the symptoms are subsiding, and the safety profiles and data are positive.

As for Rett Syndrome, the delivery protocols and techniques are very similar to those for SMA, and the unique considerations
for Rett Syndrome gene therapy are being substantiated in both mouse and primate subjects. Two of the key differentiators for
Rett Syndrome are 1)targeting the correct brain and spinal cells, and 2) that MECP2 over-expression is avoided.AveXis lab data
is positive in both respects. Similar positive news for families battling ALS was also reported.

Wow. Just absolute wow.

32 SPRING/SUMMER 2018

Please know – I am not uniquely educated or necessarily qualified to draw medical or biotechnical conclusions, but as the
grandparent of a Rett child, I’m pretty excited – actually very excited. From my layman’s perspective, this is the most exciting
news since the Bird Lab mouse reversal.Why am I talking about it? Because now, it’s more than just hope. There is real science,
real evidence, and real laboratory data that the gene can be treated– safely. AveXis will be pursuing FDA approvals for Rett
Syndrome human trials. How quick or successful that will be is still to be determined.So, what do we do now? Sit back and wait?
Throw a party?

My answer is this – we keep doing what we have been doing, and we do it with all the vim and vigor we can muster! Now is the
time to press. Now is the time to renew our efforts and drive even harder!

• Refocus on our children’s health – keeping them as strong as we can.
• Refocus on our fundraising efforts – we cannot lose this momentum!
• And refocus on educating our boys and girls and making sure they are ready – ready to step forward when the cure

becomes reality!

Today it is truly MORE THAN JUST HOPE, but there is still work to do, and we are ready to face the challenge with all of your help
and support. Every post, every share, every slice of information you use to create awareness, and every donation brings us
closer. We couldn’t do it without you, your family and your network of friends and colleagues. We won’t sit back at Girl Power
2 Cure and wait; instead, we will press on, raise more, teach more and prepare our girls and boys for the future they deserve.

PRCMagAdNEW_p2_022218.indd 1 2/22/18 1:32 PM

SPRING/SUMMER 2018 33

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