Building Strength Together

C O NNEC T IN G, IN S PIR IN G & EMP OWER IN G T H OS E A FFEC T ED BY NEM A L INE M YO PAT H Y

Issue 16, Winter 2017

Family Works Together to Focus on What They Can Do

Having 2 boys with NM actually simplifies life.
BY SHANNON WELTY

The Smith family has carved out an

enjoyable life in a family-oriented
suburb on the south shore of
Boston. Sharon and her husband,
Jeff, have adopted a philosophy that
equips their sons for success, despite
challenges that come from both boys
having nemaline myopathy.

Life is so simple because we build

our life around nemaline myopathy,
said Sharon Smith. In the beginning,
there were moments where I didnt
know if their world would be small or
big. Now I feel like my 15-year-old
has a really big world. We figured out
what doesnt work and what does. We
really emphasize what does. Jeff and Sharon Smith with their sons, Gregory (left) and Danny (right).

Gregory, 15, and Danny, 11, are close
brothers who cheer each other on and recognize each others
accomplishments, since they both understand how much
effort things take. Growing up, theyve shown a lot of patience
toward each other and they support one another in school.
Danny appreciates his older brothers suggestions for handling
social or physical situations, since Gregory has been through
it already. Both boys walk with AFOs, and Gregory also uses a
wheelchair on occasion.
Having two boys with NM means that everyplace we go
and everything we do is geared toward how its modified for
them, explains Sharon. Both can participate because we
modify for both of them. No one is ever left out of anything.
The early years
When Gregory was born, he appeared healthy and a routine
discharge was being planned. But Sharon knew something
wasnt right, especially because Gregory was having trouble
nursing. At first, hospital staff chalked it up to first-time
Continued on next page.

The AFBS mission is to find treatments for nemaline myopathy.

www.buildingstrength.org
 Continued: Smith Family Story
mom jitters. About 12 hours before the planned discharge, a
nurse looked at Gregory and noticed he was dusky gray. She
hit the button and called for backup and just suctioned this
enormous goo from him, recalls Sharon, who is so thankful
that things were caught in time.
Gregory spent a month in the NICU before going home. He
experienced many aspirations and pneumonia episodes, and
Sharon often had to leave work at Microsoft, where she was a
corporate trainer, to pick Gregory up from the day care and
run him to the ER. There were many occasions where hed
stabilize overnight, and then shed return to work in the same
clothes the next day. Though work was supportive, eventually,
they had to let her go. Ive loved every second of staying
home, she said. Losing my job was a complete relief. I
would never be the one to leave my job due to my personality.
They had to make me leave, but it was an unbelievable gift
that they gave me.
At five months, Gregory continued to experience lung
infections and doctors suggested a tracheostomy. Then the
Smiths met Dr. Hartnick, an ENT who said that before
going the trach route, he wanted to look for something to
do that was out of the ordinary. During a bronchoscopy, the
doctor discovered that Gregory had a cleft larynx, which was
the cause of his aspirations. A surgical procedure allowed
the doctor to tie up the muscles and keep them in a better
position, so the epiglottis could better protect Gregorys
airway. Gregory went from having constant pneumonia, to
not having one again in 12 years, said Sharon.
The next four years were filled with many tests but no
diagnosis. Since all the genetic tests were coming back
negative and there was no family history, doctors strongly
believed Gregorys symptoms were an isolated case or related
to an in utero brain injury or stroke. So when Gregory
turned a corner and was doing well, Sharon and Jeff had no
hesitations about having another child. Naturally, Sharon still
had some worries. Once you have a newborn fighting to live
it is impossible to forget that and not worry, she said. But I
also tried to enjoy Dannys pregnancy and cherish it for how
lucky I was to have a second baby and hope for the best.
Danny was born and things seemed fine at the outset. He
didnt go into the NICU, he could hold his oxygen and
he could nurse. Still, Sharon knew something was wrong.
2 Building Strength Together Winter 2017
Despite everyone
telling me I was crazy,
I knew he had it. I
knew the first time
he nursed. He could
nurse and swallow but
it wasnt a completely
clear swallow. I
thought he had the
same airway condition
as Gregory because
I could hear the Gregory holding his new baby brother, Danny.
slightest gurgle when he
swallowed.
When Danny was 4 weeks old, an event occurred at home
that still stands out vividly in Sharons mind. He was playing
in his Boppy pillow and I thought a bird flew in the room
because there was chirping. Then I realized Dannys airway
was collapsing. Sharon immediately rushed Danny to
the same ENT that had operated on Gregorys airway. Dr.
Hartnick operated on Danny that very afternoon to correct
his tracheolaryngomalacia. He used a laser to widen the
airway so the flap wouldnt collapse on itself. Im incredibly
thankful for that relationship with Dr. Hartnick. The ENT is
who saved their lives.
Danny hit all his milestones and walked on time, but he did
have a hard time gaining weight. When Gregory was 4 years
old and Danny was 9 months, the Smiths found a fourth
neurologist who was willing to perform a muscle biopsy.
That is when the Smiths finally learned that both boys had
nemaline myopathy.
As Sharon looks back on those early years, she says she
wouldnt change anything. If she had known Gregory had
NM, she might have decided not to have more children,
simply because she would have been concerned about not
being able to give Gregory the time and attention he needed.
Every day I am thankful that I did not have any hesitancy
about having Danny. My life would not be as beautiful
without him.
Balancing double medical needs
Gregory and Danny can often visit doctors at the same
time. When health issues have come up, theyve always
Continued on next page.
 Continued: Smith Family Story
been at opposite times. In addition,
Danny has experienced fewer health
issues and doesnt have quite as many
appointments.
Gregory has had a lot of painful
orthopedic operations with
lengthy recoveries, but even
at a young age Gregory would
decide that he wanted these
procedures to maintain his
ability to walk. Sharon says,
he was such a determined
kid, he wanted it, hes active.
Hes now 6 feet 1 inch tall,
and Sharon calls him their
man of steel, quite literally.
He has steel rods down his
tibias and the tops of his feet.
Hes had steel plates in his
hips three times to get them
right. Weve reworked his feet
three or four times, including
a tendon transfer because he
couldnt flex his feet. I think they learn
Sharon is naturally the person perseverance, calmness & strength
that handles the medical
end of things in the family, from having NM.
since Jeff has to go to work
everyday. Whenever Jeff can
give me a break, he absolutely steps in
and does anything that the kids need
so I can have a break, she said. Jeff also
attends certain appointments where big
decisions need to be made. Theyve had
to make dozens of critical health care
decisions about both boys, so they bear
that responsibility together.
Sharon explains that NM is taken into
consideration with everything the family
does and from many perspectives,
including strength, endurance,
stamina and health. Were always
trying to guide the boys to make the
right decisions for their health. They
3 Building Strength Together Winter 2017
understand the ramifications. There isnt
anything that isnt affected by it.
Things are getting easier now that the
boys are getting older. Gregory has a
sense of his own. Everything he needs
to do for his body, things he did not
want to do for exercise or strengthening
when younger, he still doesnt want to
do, but he knows hes responsible for
his progress. Now Danny at almost 12
understands that too.
Two personalities
Since both boys have NM, things run
very smoothly and theyre always able to
do the same things. The family lives in a
welcoming community where both boys
are active participants.
From a young age, both boys have taken
an active interest in raising awareness of
neuromuscular conditions. They served
together as MDA goodwill ambassadors
for Massachusetts for two years. The
boys are always open to questions about
their condition and they dont hide
from it. They participate in as many
activities as they can,
including swimming,
kayaking, piano lessons
and playing online video
games with friends. Our
life has more that we can
do than what we cant
do. My kids arent going
to ski and arent going
to play on a football
team, but they throw the
football in my driveway
all the time. I think
they learn perseverance,
calmness and strength
from having NM, said
Sharon.
Sharon says Gregory gives
the rest of the family
strength, as hes willing to
try anything, go anywhere,
express his opinion and
cheer for his friends. Hes
comfortable in many
situations that would make other people
uncomfortable, said Sharon. He
doesnt let his life be limited by NM. He
will absolutely push the boundaries of
what he can do physically every day. He
doesnt wallow in negativity, hes aware
of what his limits are. He just naturally
pursues a way to overcome it.
Sharon believes Danny has some type
of career with helping people ahead
because he is naturally sweet and kind.
He brings joy to the family with his easy
going nature and funny jokes, along
with a little sarcasm mixed in.
While the boys have always moved
Continued on next page.
 Continued: Smith Family Story

forward in life and they never whine, the family has definitely
had those conversations about their situation being a hard
one. Sharon knows the boys would love to play basketball,
football and run. She recalls a recent conversation with
Gregory, when he asked her why she doesnt run everywhere.
He also asked what it feels like to jump into the air. I think
its a smidge heartbreaking, but its honest. It hits you for a
minute. But we dont coddle the boys. We say this is how it is
for you, its not fair that you cant do it, but theres a million
things you can do and theres things that youre very good at
that others arent.
This part is more difficult now than when they were little, as
theyre becoming young men and considering their futures
and if theyll live independently from their parents. On
the flip side theyre also more mature and they have a good
understanding of what they can and cannot do. I do trust that
they will make the right homes for themselves. I know they
will have a happy life, said Sharon.
Future hopes
The Smith family hopes that someday, there will be a
treatment that will allow the boys to build more strength,
endurance and stamina in their bodies. Sharon thinks about
how much pain Gregory experiences in a single hour, and
how he always gives 100 percent effort. Sharon believes a
treatment is very possible in the coming years, as shes recently
witnessed the beginning of things getting blown open as far
as research. She also hopes that companies continue to make
tools and technologies to make their lives easier.
Sharon believes the boys will always be involved in something
that gives back, because theyve been helped by so many
people. I couldnt even give you the millions of examples of
times when people have helped us, lifted us up, doctors have
changed our lives, friends, family members, a million times
people have done sometimes small, sometimes big things.
Everything has impacted us and made our lives better.
In addition to generating a spirit of generosity within the
family, the experience of living with NM means that they
dont waste time on trivial things. We do not carry anger or
jealousy around in us, we really relish the positive things that
happen in our lives, the things that go well for my kids are
very big deals, we recognize that. Things that other people
might have thought of as not as big a deal were momentous
to us. So everyday there are so many reasons for us to be so
full of joy.3

Gregory, age 15, speaks candidly

ABOUT YOUR BROTHER
How would you describe your
brother? What do you admire most
about him?
Danny is loving, kind, thoughtful and
playful. Hes always able to make a
situation better with his presence. We
could just be brothers that ignore each
other, but I know he likes to spend time
with me and my friends as well.
Describe what it means to you to have
about what its like growing up with
a younger brother who shares the
same rare genetic condition.
a brother who understands what its
like to have NM.
Its both painful, and helpful. It is
horrible to be inflicted with it yourself,
but to see someone you care about be
plagued with this illness is terrible. At
the same time, to have someone who
knows what you are going through
makes you feel as though you are never
alone as you will always have each other.
How do you support each other?
Its not so much of a support as it is a
mutual understanding. We both know
what each is going through and realize
that if the other can make it, so can I.
ABOUT YOUR PARENTS
Whats the most important thing
youve learned from your mom? What
about from your dad?
The most important thing Ive learned
from both my parents is to always
support each other. My mom and dad
are always there for each other, problem
Continued on next page.

4 Building Strength Together Winter 2017

 Continued: Q&A with Gregory Smith

solving as best they can. They have given

up so much for me and my brother, so
that we could have a great education, in
a great school system with great people.

ADVICE

Whats the best advice youve ever

been given?
Its only school. When you are going
through what I, as well as others are
going through, you wonder to yourself,
why isnt that me. You watch kids
around you, whether its going up the
stairs without a railing, or booking it
down a hall to make the bell, you have
these thoughts of how unfair your Danny (left) and Gregory on vacation in New Hampshire in 2007.
situation is. In school, sports is usually
a huge topic, and youve got to learn to
nonfiction as well as fiction. I love How much people that dont have your
live on the sidelines or in the classroom.
history and math. I enjoy a good game situation truly care. So many people
But youve got to dig deep, and get
of chess. Im good at strategy games. are doing their best to support us,
through what can be such a miserable
whether its auctions or fundraisers or
time. Because school is just a chapter in
What is the biggest difficulty of just walking to raise money. People take
your story of life.
having NM? time out of their life to support us. You
Its not the physical effects, though could be doing so many other amazing
What advice do you have for other
those are very apparent. No the biggest things, but you are spending your time
kids with NM?
difficulty is the mental effects. NM to help others, and I thank everyone for
As I said, school is just a chapter in your
can make you feel less, unlucky like that.
life. And I know this sounds incredibly
the world has something against you
clich, but stay strong and study hard.
before you even have a chance to prove If you could have one superpower,
Because besides grades, its what you do
yourself, its like a race missing a leg. what would it be?
after that counts.
The ability to process information at
Would you say having NM has made super human level. If I had the ability
How do you deal with challenges
you a stronger or better person? to learn things far faster, I could achieve
related to having NM?
NM has obviously made me physically anything I set my mind to. I could even
You have got to be almost unaware of it,
weaker, but at the same time a better cure some of the worlds problems, such
not let it affect you. Dont be oblivious
person. I realize that what I have is not as mine.
to your challenges, but dont let it get in
the best, but it could be a lot worse.
your head, because that stuff can really
NM has made me more appreciative Would you like to add anything?
bring you down.
of what I have. I see people act as if Just live, dont let what you dont have
their life is terrible, and I dont know get you down, because youre only here
ABOUT YOU
everything thats going on in their life, for so long, might as well enjoy what
Ill admit that, but just know that it can you have while youve got it, cause you
What are your hobbies? What are
always be worse. dont know what you have until its
you really good at? I enjoy all games
gone.
(sports to the best of my ability, cards,
What has surprised you most about
board, and video games). I love to read
having NM?

5 Building Strength Together Winter 2017

 An Update From A Foundation Building Strength
A Foundation Building Strength (AFBS) is the only nonprofit actively funding research focused
solely on finding a treatment for nemaline myopathy (NM). www.buildingstrength.org

BY PATTY MITCHELL, AFBS DIRECTOR

Marc and Dana Guillet founded the organization in

2008, after the birth of their daughter Ava, who has
NM. Although the Boards main objective is to find
a medical treatment for NM, a secondary objective is
to help people along the way by developing resources
that improve care and supporting events that bring
people with NM together.

If you are interested in learning more about the

voting Board members, visit http://buildingstrength.
org/about/. In addition, the organization is
supported by a variety of board advisors and other
talented people from the community who are all
committed to helping the foundation achieve its Cliff and Alice Katz at a recent AFBS fundraiser in honor of their son Jack.
goals.
The Process
At its core, AFBSs process is simple raise money and fund
research. On a regular basis a Request for Proposal is sent to
the muscle disease research community to solicit new ideas for
promising research.
AFBSs Research and Development Committee, comprised
of seasoned medical and research professionals, evaluate
responses. Once R&D Committee recommendations
are in, the board members vote on which projects will be
funded, based on which hold the most promise for the NM
Community.
Payments on funded research are made in installments and
based on the results of research progress updates, which are
mandated as part of the funding. AFBS is very focused on
getting the maximum results for the money spent and value
every dollar donated to the cause.
The partnerships that AFBS has developed within the muscle
disease research community are strong and getting stronger
each year, as we continue to work together towards treatment
discovery. We are excited by new researchers coming forward
with ideas that have not yet been explored.
How You Can Help
We are often asked what the NM Community can do to help.
The answer is simple:
1. Get involved. Hold a fundraiser for AFBS or offer a skill
or talent to the Board. Although some are personally unable
to make financial donations, usually your network of friends
and family are more than happy to help. Typically people
are surprised by how much they are able to raise from their
network with very little effort beyond having AFBS build
a website for donations and sending out the link. One of
the realities of these types of foundations is that if the same
people keep doing all the fundraising, before long the revenue
stream dries up and the work of the foundation cannot
continue. This is why it is absolutely critical that new families
join in for a time to help continue the momentum and
sustain the work toward achieving the goal.
Continued on next page.

6 Building Strength Together Winter 2017

 Continued: AFBS Update

2. Register with the Congenital Muscle Disease International
Registry (CMDIR) and/or donate leftover tissue samples from
a surgery to CMD-TR.
When the foundation began in 2008 and partnerships with
the muscle disease research community were initiated, the
scientific community gave feedback that they were interested
in studying NM but that the data needed to complete the
studies was not available to them. Our NM Community
was unknowingly making progress more difficult by not
participating in patient registries or donating leftover tissue
samples for research. So, this was one of the first goals
with the creation of the Get Counted patient marketing
campaign.
Today, we are proud to report that the NM Community
has experienced significant increases in participation in
our patient registry, called the Congenital Muscle Disease
International Registry (CMDIR). This is directly correlated
with efforts made to educate the community on its
importance. If you are not registered with CMDIR, please go
to www.cmdir.org today.
In addition, we have established a tissue repository at the
Medical College of Wisconsin. It is managed by one of our
NM parents, who also happens to be a research professional,
Ms. Stacy Cossette. The Congenital Muscle Disease Tissue
Repository (CMD-TR) can provide NM tissue samples to
any researchers with qualifying NM studies.
Historically, researchers only had access to tissue samples if
their specific institution had a tissue bank, which is quite
rare and served to limit access and inhibit new scientists
from getting involved in NM research. So, centralizing
biospecimen access has been critical to the improvement of
treatment discovery. If you have an upcoming surgery or had
a muscle biopsy done, please contact Ms. Stacy Cossette at
stacy.cossette@cmdir.org to find out how simple it is for you
to contribute left-over tissue without any additional risk.
A Promising Outlook
We are living in very exciting times and the outlook for
treatment is significantly better today than it was when the
foundation was started. With advances in gene therapies, the
promise for treatment is better than ever but still much work
needs to be done to make that dream a reality. We hope that
you will consider supporting AFBS in 2017 as we continue
our journey toward treatment discovery and improved care.

Nutritional Webinar on March 5

You are invited to a webinar about:
Nutritional Issues for families with
Nemaline Myopathy. The webinar will
take place Sunday, March 5, 12:00 pm
PST, 2:00 pm CST, 3 pm EST.
Did you ever wonder how many calories
you or a loved one with NM need? How
can you tell if someones food is going
down the wrong pipe? What are the
risks and benefits of including fiber in
your diet?
Find out more. Please join the
meeting from your computer, tablet or
smartphone.
https://global.gotomeeting.com/
join/601938029
You can also dial in using your phone.
United States: +1 (669) 224-3318
Access Code: 601-938-029
More phone numbers
Australia: +61 2 9091 7603
Austria: +43 1 2060 92964
Belgium: +32 27 00 6375
Canada: +1 (647) 497-9373
Denmark: +45 43 31 47 79
Finland: +358 972 52 2971
France: +33 170 950 590
Germany: +49 69 5880 7802 72
Ireland: +353 15 621 583
Italy: +39 0 230 57 81 80
Netherlands: +31 707 709 520
New Zealand: +64 9 282 9510
Norway: +47 21 93 37 37
Spain: +34 932 75 1230
Sweden: +46 853 527 818
Switzerland: +41 445 1124 85
United Kingdom: +44 20 3713 5011
First GoToMeeting? Try a test session:
http://help.citrix.com/getready

7 Building Strength Together Winter 2017

Artist Creates Tongue Depictions
BY PRISCILLA WONG
What originally began as a hobby of
creating vibrantly colorful digital art
has transformed into a new passion
of mine. I graduated from UC Davis
in 2012 with a bachelors degree in
Women Studies with minors in Middle
East/South Asia Studies and Religious
Studies. Although my career goals
have always revolved around making
a positive impact in marginalized
communities through a non-profit
organization or other community
outreach program, Ive always been
drawn to various forms of art and how
it is used to depict the beauty of the life
we lead and the magnificence of all that
surrounds us.
As a child, I enjoyed drawing, coloring,
and painting, but because of muscle
weakening due to nemaline myopathy, I
slowly lost the ability to use my hands.
With the loss of hand movement by
age 10, my artistic inclinations were
suppressed and did not reemerge until
mid-2015 when on a sunny afternoon, I
decided to experiment with painting on
my computer using a tongue-controlled
device. At that time, I was undergoing
8 Building Strength Together Winter 2017
Priscilla Wong focuses on enhancing
typical everyday scenes as she paints
using her tongue.
significant respiratory issues that forced nothing is impossible despite the various
me to be in my bed for extended periods limitations that each of us face, and it is
of time because it was more difficult to my utmost desire to convey the message
breathe sitting up. Little did I know, that something wonderful can come out
what I thought would be a hobby to of a dark period in ones life.
pass the hours became something much
more for me. My goal is to make our world a little
more happy and beautiful through
My work focuses on showing typical my creations. It is an honor to create
everyday scenes in nature and life and something that can be admired for years
enhancing their beauty through an to come.
array of colors. I love the vast spectrum
of colors in the
world and want
my paintings to
reflect that love
of color. Aside
from bringing a
bit of cheeriness
to people through
my use of bright
colors, I hope that
the community
will find a bit
of inspiration
through my To view more of Priscillas artwork
work. It has or to contact her about a purchase, visit
always been my
www.facebook.com/tonguedepictionsbypriscilla
firm belief that
 Kids Corner
Marlaina Vener
HOMETOWN:
Mechanicsburg, Pennsylvania, but I was born in
Washington State! We are a military family :)

AGE:
8 (9 at the end of March)

FAVORITE THINGS:
playing legos with my 2 older brothers
reading
playing outside
penguins
dog Millie and bearded dragon Milo
anything pink for breast cancer awareness What Im good at:
I am good at math, ordering my big brothers around, being
HOBBIES: kind to my friends, and talking people that I care about into
playing the ukulele doing things for me :).
archery
shooting rifle What Im learning:
swimming I am learning geometry in math class at school, new
bowling shooting skills with my rifle, and how to better conserve
taking pictures water with my Girl Scout Brownie Troop.

What I like about my family:

They are nice to me, they do things for me, play games with
me, and always make me feel included in everything our
family does. My dog Millie always likes to snuggle with me
at night.

What five words most describe you?

Happy, friendly, helpful, encouraging and thoughtful.

What is the hardest thing about having NM?

I get frustrated and feel sad that I cant do some things that
other people can do like running, going up stairs and eating.
If there was one thing that I could wish for, it would be to
be able to eat all the foods that smell so good.

What would you invent to make life easier for people

Our family includes Michael (dad), Melanie (mom), Max (14-year-old
brother), Marcus (11-year-old brother), Marlaina, Millie the dog and
last but not least, Milo the bearded dragon!
9 Building Strength Together Winter 2017
with NM?
I would like to invent something like rocket boosters that
you could strap on your legs to help you walk, run, go up
stairs or do anything with your legs that you want to do.
That would be so cool!
 Carol Conway, left, is a former journalist who
has NM. Now age 53, she has compiled a series
of articles depicting her life at different ages.
Carol lives in California with her family, including
26

36
daughter Emily, who also has mild NM.

BY CAROL CONWAY

When a person has a genetic birth
defect (I meanwhy do we call it that,
anyway? Defective how? Whats the
antonym birth advantage?). OK, so
when a person is born with a disability
that runs in their family, as long as its
not fatal, that person is, at some point,
going to consider whether or not to
have a child. My father must have done
it, as he had the same generalized
muscle weakness that his mother had
come to think of it, did my Omi
consider the effects of passing it down?
Two of her three children were born
with it how did she feel about that?
We know now that it was NM, but did
they just assume everything would be
OK, simply because it always had been?
My parents decided to have a family
as part of the natural progression of
things. Theyd been happily married for
three years, my father had two thriving
jewelry stores, theyd built a house and
had a very nice life. My brother was
born without incident in 1961, and
18 months later I came along. I was
born with TPM2 Nemaline Myopathy.
At birth I was generally weak but
especially so in my neck, and delayed
in milestones such as holding up my
own gigantic head. (The large noggin
has nothing to do with NM, it just
runs in my family.) I didnt crawl well
and waddled when I learned to walk.
I fell often, always hitting my head on
the ground. I had lots of bloody noses,
and in most family photos Im sporting
band-aids on my knees. My parents got
through my infancy and went ahead
two years later with child number three,
my little brother, who is unaffected.
I had a normal childhood with slight
adaptations, and two boisterous
brothers who didnt let me get away
with any special treatment.
Fast forward to 1999. Im 36. I had
quit a career as a journalist in 1995,
after becoming aware of how traumatic
it was to be a first responder via the
newsroom. My mom had realized her
dream of joining the Peace Corps,
found her niche in Belize, and decided
to stay there and build a hotel. (The
Peace Corps dream was one shed had
with my father, who didnt live to see it
happen. He died from a terrible cancer,
when I was nine.) It was a good time
for me to leave the news business and I
decided to see if I could do anything to
help my mom get her business off the
ground.
I started out tiling bathrooms and
chipping cement, and found a love
of cooking, creating lunches for the
work crew. When we opened I waited
for the people to come, and nourished
my soul with silence and books, and
beautiful vistas. In the end the people
came in droves; tourists and mission
groups, medical teams and history
buffs, families and newlyweds, writers
and artists. I had created a successful
restaurant attached to a thriving small
hotel. I made friends with Belizeans and
expats, worked long, hard hours, and
had the time of my life.
I got all the way to 35 without
considering pregnancy. I led an amazing
life and didnt want a child. Tick Tock
Boom! Surrounded by family-oriented
Belizeans, in a world without nannies,
my biological clock went off. I was still
falling occasionally, and sometimes had

10 Building Strength Together Winter 2017

 Continued: Carol Conway at Age 36
trouble with stairs I always used the
hand railing. But I was still able to get
up off the ground and wear heels, and
felt strongly that I was emotionally
ready to share my life
with a child. I suppose
most people would have
had a big conversation
with a doctor on We have spent our lives thinking, planning, figuring out
the pros and cons of
pregnancy, and an even
bigger conversation how to make things work at any moment of each day.
about an NM parent
dealing with a newborn
who could potentially
have NM but I lived
in Belize. I didnt even
see a practitioner until I was 6 months
pregnant.
The pregnancy went well, she moved
what I felt was normally starting at
about five months, and I was able to
carry her to term with no problems.
I fell once when I was pregnant, but
babies in utero are really well protected,
and she was fine. I didnt have anyone
to talk to about childbirth with this
disability, and though neither of the
two women with NM in my family had
problems delivering, my doctor decided
I should have a c-section, which was
fine with me. I had no confidence in my
ability to push out a baby. So about a
month after I turned 36, I walked in to
the role of a lifetime, as Mom.
Kids with NM go through life adapting.
Every day we make little adjustments so
that we can do things; put your hand on
your knee to get up off the ground, lift
heavy things using creative leverage. We
have spent our lives thinking, planning,
figuring out how to make things work
at any moment of each day. Parenting a
newborn and toddler was no different.
To pick her up off the floor, I sat on the
11 Building Strength Together Winter 2017
couch, lifted her to the couch, put her
next to me, stood up, then picked her
up. I held her on one hip, leaving one
arm free for balance as I walked. We had
--Carol Conway
one scary fall, when I was holding her
with two hands. I turned and went to
step forward, not realizing there was a
short potted plant in front of me. I went
down hard on my knees, and PLOP!
Emily landed on her diapered bottom
in the planter. Such a great landing! But
I had to yell for help, as I couldnt get
up without using my hands, and she
was still too little to sit up on her own.
My friend came to unplant Emily, and I
worked my way up and went to ice my
knees.
I also found it was easier and safer to
carry her in her car seat. I had the type
that adapted to fit in the car and the
stroller, so I was able to lift the whole
seat out of the car and in to the stroller
to take her places. When she was bigger,
Id lift her out of the stroller, have her
stand up, lift her to the car, then the
seat, then the car seat. If she needed to
be held in a toddler emergency, I would
sit down and pick her up. I think she
often stood crying, waiting for me to
maneuver to where I could pick her up.
I asked her about this time in her life
if she remembers anything that she
would now recognize as different. She
said if I wanted you to carry me, Id
have to stand on a chair. Thats the only
thing I remember.
Emilys 17 now. I cant compare
disabled parenting to anything else,
since its all I know. Im so glad -so
glad! for the biological bomb that went
off when I was 36. Being a parent has
defined this part of my life, and my
role as a parent has changed over the
years, naturally. Being the best person
I can be, to help Emily become an ever
better version of human (isnt that what
we all do?) is a process Ive loved. As
my NM has progressed and the day-to-
day is more difficult, I realize Emilys
watching everything I do in this regard,
and probably wondering about her
own future with NM. (Ormaybe
not. At 17 its enough to get through
each traumatic day!) If she decides to
have children, I hope Im around to
meet them. I hope that she listens to
the advice of first world doctors, and
then does what she wants without being
afraid. I hope my role in digging up a
diagnosis and being part of the NM
community bears some weight in her
acceptance and definition of disability
in her life. I hope that she remembers
that with love and a little courage,
anything is possible. 3
 Join us in New York City for 2017 NM Gathering
BY LYN BAIER
At the last gathering in summer 2015, 20 families attended from as far away as the Midwest, Canada and even Sweden!
Greetings from the Baier family. We will host our 5th summer
Nemaline Myopathy Gathering in New York City on June
24-25, 2017. We hope you will be able to join us. Our family
is committed to hosting a gathering every summer when
another formal NM Community event is not planned.
While we are still finalizing details, the schedule will look
similar to this:
Saturday, June 24
Small Group Meetings (e.g., families meet in residence hall
rooms) (9am - 12pm)
Lunch on your own (12 - 2pm)
Large Group Gathering (2-5pm)
Dinner out (5-7pm)
Sunday, June 25
Outing in New York City
For the gathering, we have a large indoor/outdoor space
in our building where we host the event. This will be an
12 Building Strength Together Winter 2017
opportunity for families to informally get to know each other
and learn from each other. We will also have a variety of
activities for kids. Past activities have included a magician,
face painting, games, and movies. We will plan other weekend
activities for families who will be around and interested. In
the past, we have gone on trips to the Bronx Zoo, Liberty
Science Center, and the Empire State Building. We are
excited to have some grant funding to put towards the event
this year and will be able to sponsor a nice dinner out for
all in attendance that will be within walking distance of the
gathering.
Another exciting change for this summers gathering is that
we will be able to offer a limited number of apartments
(approximately 10) to stay in at a rate of $125 per night to
help make the trip to NYC more reasonable. My wife oversees
the residence hall system at New York University so we are
excited to be able to do this. All apartments have a kitchen,
bathroom, are accessible and pretty spacious for NYC
standards. Linens will be provided. These are residence hall
spaces so there are no additional amenities (i.e. televisions),
Continued on next page.
Continued: 2017 NM Gathering
however, free Wi-Fi will be available.
The grant money can also be used to
assist with housing costs. Once we have
a better sense of how many families
are interested in attending, we will be
able to let families know what type of
discount will be available on the $125
per night rate.
If you are interested in attending, please
email Lyn Baier at lynreneebaier@gmail.
com. For those from out of town and
interested in staying overnight in the
NYU residence halls, please include
this information as well with numbers
attending and dates interested in
staying overnight. NYU housing will
be available on a first come, first serve
basis. I am also happy to recommend
hotels if you would rather stay in a hotel
or we are not able to accommodate all
participants in NYU housing.
We look forward to this weekend every
year and love connecting with new and
old NM families. New York City is a
wonderful place to visit and incredibly
accessible. Please feel free to reach out
with questions.
Product Corner
This product idea was sent in by Sarah Foye, occupational therapist and mom
to AJ, age 16.
Skin Barrier Cream
$11.20 for 1 oz.
Looking for a skin barrier cream to prevent skin
irritation with non-invasive ventilation? Only non-
petroleum products are recommended with most masks.
One option is RoEzIt, which is available on Amazon.
http://a.co/4HZiKGK
Future Power Suit?
California-based startup
Superflex and designer Yves
Bhar are working together
on a powered body suit that
is like a lighter version of an
exoskeleton. It features motors
that add muscle power and
make movement easier.
Its being developed with the
elderly in mind, but they are also considering how it can help people with
disabilities. Read more at www.wareable.com/saves-the-day/superflex-yves-behar-
aura-powered-smart-clothing-elderly-667

A Foundation Building Strength Submissions Newsletter Committee

3825 El Camino Real Have a story to tell, news, Lyn Baier
Palo Alto, CA 94306 tips, an adorable kid photo, or Stephanie English
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us at patty@buildingstrength. Patty Mitchell
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Donations news in an upcoming issue!
This newsletter from AFBS is produced by several volunteers, each
Comments and suggestions are
the parent of a child with NM. Started in 2011, Building Strength
also appreciated.
Together is always provided free of charge. However, donations
are gratefully accepted. To make an online contribution, visit Information or suggestions contained in the NM Newsletter should not be
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