We are looking for contributions in written form relating experiences, thoughts
and feelings from those with Moebius Syndrome, their parents or family
members,....the Warriors.
In addition to these articles we are
accumulating an email address listing
of volunteers that are willing, (via email or by mutual agreement in
other formats) to talk to individuals that are new to the world of
Moebius Syndrome. This list is categorized by age of child
and also by age in the case of Moebius adults.
By contributing or submitting material to this site you agree to have the
submission used on this site or in other formats as
may deemed appropriate by Moebius1.org.
I have entered my first experience with Moebius Syndrome as an example of
the format. We also take pictures. So,...in short, if you have an
experience etc,or a picture that you care to share, we'll do our best to
get it on the site. If you will entertain email from those in need,
we will add your address to the list. A one line bio would probably
also be included. For example.... TITLE OF CONTRIBUTION (If any) Mom(Mary),
Suzy (F-5)
This would allow those in a similar situation to pinpoint their comments
and questions.Thank you in advance for your participation.
Just contact me,
webmaster@moebius1.org |
"DARLENE"
Female, Age 52 (2004)
"DAVE MOFFITT"
Male, Age 61 (2004)
"PRINCESS PAIGE"
Aunt(Tina),Paige(F-3)
"MY LITTLE
GIRL"
Natalie Renee'
"SMILE FOR THE
CAMERA"
OK,....ready,....smile!
"SURGERY FOR THE
IGNORANT"
Experience as a teenager.
"INTRA OCULAR
OPHTHALMOPLEGIA"
Bilateral cataract surgery and YAG laser
surgery
"DEDDI HAS NODIUS
SYNDRONE"
There is humor to be found.
"ANITA'S
STORY"
20 Year Old Female With Moebius
"CATHERINE"
23 Year Old Female With Moebius
"CROSSED &
CROOKED"
45 Year Old Female With Moebius
"ISABEL'S
MOM-MOM"
Grandmother(Joan),Isabel(F-14mo.)
"SUZANNE'S GOOD
NEWS"
Mom(Suzanne),Isabel(F-14 mo.)
"NOTHING TO IT..."
Grandpa,Child(F-Newborn)
"MOEBIUS & RELATED
DISORDERS"
Mom(Tara),Chris(M-12)
"WE ALL FALL DOWN"
Mom(Lori),Chelsey(F-11)
"A MIRROR WILL
SUFFICE"
Mom(Vicky),Colton(M-17 mo.)
"STEVIE"
Mom(Tara),Child(M-12)
"TRITON'S STORY"
Mom(Stephanie)
"CHAD BOLDT"
Dad(Steve), Son(Chad)
ERIN'S STORY
Mom (Dawn) |
"COLTON"
Mom(Vicky),Colton(M-17 mo.)
"TIRED"
Mom(Suzanne),Isabel(F-14 mo.)
"...LIKE A ROLLER
COASTER"
Mom(Phyllis),Lily(F-5)
"AGREE OR
DISAGREE?"
Grandpa,Sam(F-Newborn)
"ANOTHER CHILD
?"
Dad(Nick),Jonathan(M-2)
"INSURANCE
COMPANIES"
Mom(Phyllis),Lily(F-5)
"I HAVE
MOEBIUS..."
Teri (F-34)
"IS THERE A
CONNECTION?"
Mom(Suzanne),Isabel(14-mo.)
"BUT MY BABY NEVER SLEEPS
!!!"
Mom(Tara),Chris(M-12)
"LISA: MOEBIUS
ADULT"
Lisa (F-24)
"WEARING TWO
HATS"
Sandy (Teacher-with Moebius)
"MOEBIUS AND
AUTISM"
Mom(Vicki),Sean(M-9)
"TYLER B. - MOEBIUS
WARRIOR!"
Mom(Denise),Tyler(M-2+)
"RESPIRATORY ILLNESS
- A MOTHER'S STORY"
Mom(Martha),Michael(M-4)
"NEVER GIVE IN-NEVER
GIVE UP!"
Mom(Denise),Tyler(M-2+)
"KAYLEE"
Mom(Melissa),Kaylee(F-4)
"ERIK'S STORY"
Mom(Milena),Erik(M-1994)
"MY SWEET LITTLE
ANGEL"
Mom(Robbie),Cassandra(F-1999)
"OUR NINE YEAR OLD
SON"
Mom(Unknown),Unknown(M-1991)
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