I was a typical dad thrilled to hear the news, when
my wife was 20 weeks pregnant, that we would be
having a son. My imagination went wild as I starting
planning out his future and prepared the tips I would
give him with regards to sports and girls. Not that I
had mastered either of these during my young life,
but he could at least learn from my mistakes. While I
was growing up the coaches son always got to pitch
in little league, so I was prepared to sign up to coach
all of the sports he wanted to play.
      
      In high school, Fridays in the fall were the best.
In the morning you would see the girl of your
choosing wear your jersey down the hall and then
under the Friday night lights they would call your
name over the PA system after making a great play.
There was no bigger thrill in front of a football crazy
town like Middletown. I may not have made as many
great plays as I would have liked to and not have
been as big of a star as I had wanted to be
, but with
us working together and with God blessing my son
with some size,
my son could be the homecoming
king and State Championship Quarterback!

     As soon as Jack was born my excitement for
having a son skyrocketed as he was fina
lly here!
However my future plans for him were tempered as
he could
n't even hold his head up, let alone throw the
pigskin with his old man. In the meantime holding
hi
m, kissing him and making him laugh were pretty
cool too.

     First time parents, especially the mo
thers, do a
lot of reading and comparing what the books say
your child should be doing and at what age they
should start doing it. Ever time a skill is learned
ahead of schedule
you swear they are a genius and
with every delay you worry that something is wrong.
The best advice you receive from veteran parents is
that all children are on their own time
line. This
advice is
largely ignored until child number 2 comes
along. Like most children Jack excelled at some skills
and was delayed in others. We worried slightly but
eventually he picked up on everything and we rejoiced
with each victory.

     At his 18 month doctor’s appointment
our
pediatrician was concerned with Jack’s lack of
vocabulary and that Jack did not fully walk on his own
until 16 months. Our doctor recommended we take
advantage of the infant and toddler’s program
offered in Frederick County that helps children get
caught up. This was a humbling experience as Jack
participated in the program with children who had
more obvious disabilities. Jodie and I told each other
that he just needs a little extra help and if we worked
with him and prayed for him Jack would catch up to
the children his age.

     After tracking Jack’s progress in
the program it
was recommended to us to visit Kennedy Krieger
which specializes in working with children with
disabilities. Jack had not been diagnosed with
anything up to this point so I was not sure why we
agreed to do this. They put Jack through a full day of
testing and determined that he was severely delayed
but appeared to be a typical developing child.

     They also encouraged us to have Jack tke a blood
test to rule out certain possibilities and they told us
the results would take 6 weeks. Eventually Jodie
received the results by telephone and called me at
work crying and explaining that Jack had been
diagnosed with Fragile X. What the heck is Fragile X?
I remained calm and told her that we would talk
about it when I got home and I was sure everything
would be ok. Now that we know what it is we can treat
it. When I got home Jodie had done some research
online and showed me a video of a teen that had
Fragile X and they showed him during a day at
school. The child in the video was noticeably
challenged and had a hard time staying focused and
controlling his emotions. Everyone in the school knew
and loved this kid, but in my extremely ignorant
opinion at the time I felt it was for all the wrong
reasons. Visions of the character Cuba Gooding Jr
played in the movie Radio flashed through my mind.
We learned that Fragile X was a mental handicap that
there was no cure for and all we could do was get
him as much speech therapy and help as possible but
he would always be delayed. All I could think of was
that middle school and high school were hard enough
to survive as a “normal” kid and now our child was
going to have to go through all of it with a disability.
Jodie and I took turns during the next few weeks
crying and being strong for each other.

     Talking to a geneticist did not help as she had to
do research on Fragile X prior to our appointment
because she had no experience with it. Not only did
our son have a disability but he had one no one had
ever heard of. More research showed that Fragile X is
very common and we were able to connect with other
families who have a loved one with Fragile X. But the
haunting reality is that there are very few people we
talk about Jack with who have heard about it. It
doesnt get the attention that other disabilities get.

     Jodie and I decided pretty early that we had to do
something to raise awareness and support for the
re
search and hopeful one day cure for Fragile X.
Cornho
le has spread through the country extremely
fast as a popular tailgating game and tournament
that anyone can participate in. We decided to ride its
wave of excitement and incorporate it with Fragile X.
We hope, with your support, that the tournament will
continue to grow which in turn will help raise
awareness and funding
for FRAXA and their efforts.

     Only God knows what Jack’s life will bring for him.
We have decided to get him as much help as possible,
commit ourselves to helping raise awareness and put
everything in God’s hand through the power of
prayer. Although Jack has many disadvantages he
also has many favorable character traits that the
rest of us should envy. Jack sees the good in
everyone. He is fun loving, extremely caring, is
almost always in a good mood and craves human
interaction. Jack enjoys the simple things in life that
the rest of us take for granted. Imagine a high five
bringing you complete joy and making sure that no
one passes by you without you saying “Hi!” to. That is
Jack and that is human nature at its very best. He
may or may not lead a team to state but he is my
hero!

     Thank you for your support of the tournament.
You mean the world to us just by having fun and
playing cornhole!

-Dan, Jodie, Julianne and JACK!