The Shikoras Take CHARGE in Orlando

The Shikora Family: Taking CHARGE in Orlando.
I have to begin this by saying I can’t believe we waited 12 years to go to our first
CHARGE Syndrome Conference. It was one of the most incredible experiences we have
had since Hannah was born. Coincidentally her 12 th birthday fell during the week of the
conference. What a way to celebrate! We have not traveled much since Hannah was
born. Prior to this conference we were always very nervous to go too far from home. We
were immediately inspired by the families who traveled not only to this conference, but
who have been attending conferences since CHARGE Syndrome became a part of their
lives. It did not take too long to realize after we got there, that we are a CHARGE
Family and we can do anything! We always feel so alone in our day to day struggles and
all of a sudden we were just like everyone else.
The conference itself was so much more than we had ever imagined. From the pool party
kickoff to the conference farewell we were completely immersed in everything that was
going on. Our three girls enjoyed every moment as well. The camp program was
phenomenal for Hannah and her younger sister. Our oldest daughter enjoyed some of the
breakout sessions as well as being a Jr. Leader for sibshops. The way the conference was
coordinated to include every family member made it really special for all of us. We
couldn’t help feeling overwhelmed just thinking about the coordination it must take to
organize this conference.
Meeting some of the people who to us ARE the CHARGE Syndrome Foundation was
one of the best parts of the conference. Those we have spoken to on the phone, emailed
or have heard on a webinar…we felt like we were meeting celebrities. Not to mention
the actual celebrities who were there, Signing Time’s Rachel and Leah. I had to mention
that as it was definitely a highlight for us. It was also great to meet all of the researchers
who have dedicated their lives to asking questions and helping to provide answers about
CHARGE. We found the research fascinating and were thrilled to have the opportunity
to participate in some of the studies being done at the conference.
We already can’t wait to go to the next conference in Dallas. This will be the furthest we
have ever traveled, but we are a CHARGE Family and are already prepared for the
challenge. We can’t wait to see the friends we met in Orlando and look forward to
meeting other families, making new friends and learning even more about CHARGE
syndrome.
We are so appreciative to the programs that helped us get to our first conference.
Without their assistance it would have been really difficult for us to attend. Thank you to
Hannah’s Helping Hands, New York Deaf-Blind Collaborative and of course the
CHARGE Syndrome Foundation. Your financial support in helping families attend this
amazing conference as well as all of the emotional support we have received over the
years has been incredible. We hope that in the future we can give back to these programs
and help another family go to their first conference. I can assure you it will be an
experience you will never forget.