Monday, June 1, 2009

Meet Lynnea - An Adult with ACC

"I’m Lynnea (said like renae but with an L)
I’m 23 years old, and I have C-ACC. I grew
up in a Christian home. My father worked
with special needs adults, and my mother
taught special needs children. From a
young age my parents new I was different.
But weren’t sure how. I wouldn’t crawl
forwards for the longest time (only backwards)
It took me a long time to walk (I was almost
15 months old) and even then my right foot
would turn almost completely in. I couldn’t
ride a bike (still cant) and it took me
forever to learn to tie my shoes. When my
parents tried to get me tested for special
needs the school system refused. But my
parents and I went on, they started teaching
me how to walk without turning my foot in,
and I even learned to tie my shoes. I always
got hurt when learning to ride a bike so I
stopped doing that.

Throughout my schooling I wasnt the best
student. By 2nd grade my teachers were already
saying I was falling behind. Part of this was
because I was getting bullied at my old school
so my mom took me out of the school and put me
in a new one. And that school was ahead in what
they were teaching kids my age. By the end of
3rd grade the school system wanted to hold me
back. My parents disagreed with the school
system so they didnt hold me back. But mom
begged them to test me for a learning
disability and that is when they refused to.
Instead they decided to put me into a gifted
program because they thought maybe I wasnt
being challenged enough. The gifted program
basically was to help me learn study techniques
and in my opinion really helped me in my
schooling. Though I really struggled with math,
I loved science and english. I was getting
by in school with a's b's and c's.

By the time I was in high school I started
getting b's, c's, and d's though I was in
band and choir and got a's in both of those.
After my father died (you'll read more about
that below) I was put on homeschooling for a
year and a half. Because of the one on one
attention I was getting I did much better.

Then my senior year I finished school with a
better chance of getting into college. I
touch on this more later but college is still
a challenge. I love it, but I've got to stay
focused on my studies, and I still get special
tutoring when taking math, and even science
and english. With the one on one attention
that professors and tutors give me and the
patience I've received and my own determination
thats what's helped me all through my school,
before and after I found out about my ACC.

The best thing for me was the patience that
some of those that have worked with me showed
me. When someone gets annoyed with the fact
that I'm not getting something, I get
frustrated with myself and then nothing gets
accomplished. So concerning my education,
thats what I've learned about myself and
my ACC.

My childhood was a good one. I was a
generally happy child that lived by the
“never give up” motto, when it didn’t
include bike riding. And then at 8 years
old I became a Christian. This was also
around the time that my dad got very sick.
By the time I was 14 my dad had 5 knee
surgeries (2 on one, 3 on the other) and
was diagnosed diabetic. 2 months after my
15th birthday my father was diagnosed with
Leukemia. 3 months later my mother broke
her arm in half. I was my parent’s only
child, so at 15 it was up to me to take
care of both of my parents, and the house
chores. I was basically my father’s home
nurse. It was a great experience though
tough because I learned how to take care
of others and myself. Then in Sept of 2001
my father died.

During the next 3 years I became very
depressed and started showing more signs
of “being different” the depression brought
out the worst in me. Then when I was 18 I
graduated high school (after being homeschooled
for a year) Finally I was out of school, and
I wanted the experience of living away from
home. I got my license at 18, and had a wreck.
Then I moved in with my brother and got another
car. A year later I wrecked that car. Then I
started college at a Christian University.

My mother was getting more and more concerned
with the fact that I was showing more signs
of being clumsy. So she took me to a neurologist.
He had me get an MRI and that’s when I found
out I had ACC. I was 20.

Once again I entered a deep depression. Life
was tough. But I decided right then, that if
I didn’t find out til I was 20 I could hide it.
For about 6 months I did. No one thought any
different of me. Then after about a year I
started telling people. My life started making
more sense. But people started being mean.

After I started speaking out about my ACC
people accused me of wanting attention and
even of lying, they made fun of me when I
had one of my “ACC moments.” Even at a
Christian university I was getting mistreated.
My school didn’t understand, and I wasn’t
getting the accommodations I needed. No one
realized that the deeper I get in school the
harder it is. But I decided to press on. For
every person that made fun of me, there were
5 that accepted me. For every professor that
didn’t accommodate me there was 1 that did.
I saw a light at the end of the tunnel, and
kept on going.

Now my goals are to finish college. I’m a
youth ministry major, and it’s something that
I love to do. My grades are pretty good,
though I have to try harder than a lot of
others, I’ve learned to stay determined.
I’ve got one more year of college, and then
I’ll be a college graduate and that will be
great. After college I want to start my
ministry of teaching kids about Jesus. But
even more than that, I want to reach both
adults and kids with ACC. I want to reach
school systems, the medical field, and people
all over the world telling them about this
rare brain disorder. I want to be someone
that can be a bridge between the gap of
people with a Corpus Callosum and those
without. To spread the word about this disorder
that many don’t know about. I want to help
with the knowledge of the disorder, and help
others understand that everyone is different.

College has been great for me, it helped to
shape me into who I am and gave me an
independence I never thought was possible.
I still don’t drive, but there are other ways
to get around, and I’ve got great friends.
College has helped me with ways to cope with
this life as an ACCer. No matter what the
negatives in life there are always positives.
There is always a chance to smile in the midst
of a storm.

My involvement with ACCA is this: About a
year ago I started thinking about the fact
that I have a voice, I have a chance to
speak out about ACC and help others learn
about it. I have a chance to be someone that
ACCers can look up to. And so I started ACCA
(ACC Awareness) and it’s been one of the best
things that’s happened in my life. I have met
wonderful parents, as well as wonderful kids
and adults with ACC. I’ve made friends that
understand me on a level that I never thought
possible. I’ve been able to tell people about
ACC that have never heard of it. And they’ve
been able to tell others that have never heard
of it. It’s been a blessing in my life, and now
we’re working on getting media attention as well
as making videos full of ACCers both children
and adults.

Always remember, In God's eyes we are all special

Please read and sign the
Petition to Help Generate Media Attention for ACC

Contact Lynnea by E-Mail or through her

Saynow number: (740)205-6957

More Information about Lynnea and ACCA:

Agenesis of the Corpus Callosum Awareness Website

Letting People Know About ACC...Blog

ACCA on MySpace

ACCA on Twitter

You can view more videos by Lynnea on YouTube

I am so thankful to have the pleasure of
meeting Lynnea through our e-mails. She has
such a positive spirit, a bubbly personality
and, as you can see, a HUGE passion for
creating awareness about Agenesis of the
Corpus Callosum (ACC). I give thanks to
Lynnea for being so open and willing to share
her personal story. :)

If you are an adult with ACC or a corpus callosum
disorder and you would like to tell your story
here please E-Mail me.

Note: C-ACC stands for complete ACC-meaning the corpus callosum is completely missing.


  1. Sandie & Lynnea - Thank you for sharing your story. Your courage and strength are inspiring. My son has P-ACC and although he is just 13 months I will tell him about you!

  2. Hello Sandie,
    Just wanted to mention to Lynnea that I got us 10 signatures yesterday for the petition and am working on getting more :) YEY

    Araceli Sandoval *Briannas Mommy Complete ACC 21 month old*

  3. Got us 10 signatures! WOOT woot!

    Araceli Sandoval from California
    Briannas mommy C-ACC 21 Month old!

  4. Thank you Jody for your kindness and comment, and also thank you to Araceli for telling people about the petition and getting so many signatures!! Thats awesome, please do continue to help with that. God Bless,

  5. Jody,

    I am also thankful that Lynnea chose to share her personal story here for others to read.

    Lynnea is an incredible lady with a heart of gold. She definitely deserves all the credit.

    I passed on your comment to her Tuesday night. :)

    I'm keeping your precious little one in my prayers.


  6. Lynnea, thanks so much for telling your story! :) I am not sure, at this point, if my son has any degree of CC underdevelopment, but this info is very helpful. I'm so glad to hear you're doing so well, too! :)

    LIZ (Drew's mom) :)

  7. Liz, thank you for taking the time to read my story and I'm glad that it is helpful! I love telling others about the disorder and how I've coped through the years when I didnt know and again when I did. I'll be praying for your son and for you as you go through the years. God Bless

  8. hi. i have a baby girl who also have ACC.. i'm so thankful reading your story, because, i taught that my baby dont have a chance to live like a normal person.. but you did, that's why my heart is pounding, im so thankful that my baby will still have a normal life like you do..
    -Luz from philippines


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look forward to hearing from you. Thank you.