Fall 2010 - National Marfan Foundation

10
Connective Issues
Chris (diagnosed with Marfan syndrome at the age of three
after the death of his father from Marfan syndrome):
Ifiguredoutwhatmytalentswereandusedthem.Iwantto
live in a great community, so I worked with the Marfan support
groups in the states I have lived. I had to make sure I knew
how to take care of myself. Then, I decided to take the time
Ihaveanduseitwell.Youneedtoaskyourself,“What’smy
choice?” Everyone has the capacity to do this and then make
the choices that will help you have a great life.
Steve (diagnosed with Marfan syndrome at the age of 25
after suffering an aortic dissection):
Living Successfully Panel Offers Tips for Coping
with Marfan Syndrome and Related Disorders
The closing program of the conference is always a highlight. It features a panel called Living Successfully with Marfan Syndrome
and Related Disorders.ThemoderatorthisyearwasChrisHeaney,ofAustin,TX.ThepanelistswereKaddyAckroyd,ofSalem,
NH, Peter Donato, of Framingham, MA, Rachel Epperson, of San Antonio, TX, and Steve Marpman, of Queens, NY. Each
offered their personal insights into living successfully.
My goal was always to find a way to make Marfan syndrome
part of my life, without letting it take over my life. I am
active in trying to help other people. I try to give back as
much as I’ve gotten from this Marfan community because I
myself have received inspiration from so many people.
Fall 2010
Living Successfully: KaddyAckroyd (seated)with (L–R) PeterDonato,
Rachel Epperson, Steve Marpmanand Chris Heaney
Peter (16 year old with Loeys-Dietz syndrome):
My first conference was in 2006 and I had a blast. Plus, my
parents learned a lot so they didn’t have to worry as much. I
found it helpful to learn about my condition and talk to
teachers and other students at my school. It’s up to you to
make life the greatest you can.
Kaddy (diagnosed with Marfan syndrome at the age of 5):
IwillnotletMarfansyndromekeepmedown.Ijustkeepon
truckin’. I will share information with medical professionals
whenever I can. Even when I am in the hospital, I’ll ask, “You
haven’t seen Marfan syndrome? Come look at me. This is
what it is.” I do a lot to educate EMTs (emergency medical
technicians)—this can help save lives, even my own. I haven’t
let Marfan syndrome run my life. It’s true that I can’t run
around with the kids in the neighborhood, but I can knit. I
have found my outlets in things that I can do.
Rachel (mom to four-year-old Sarah, who has Marfan
syndrome):
Shortly after Sarah was diagnosed, I contacted a local support
group. I grappled with the questions: “Why?” “Why my kid?”
Then I realized that it doesn’t matter why. I just chucked
“why” out the window. I believe three things:
• God created Sarah how she is. She is the most beautiful
girl in the world. I tell her this every time I can. She is
not defined by Marfan syndrome just like my red hair
does not define me.
• I am Sarah’s caretaker. My responsibility is to learn and
learn and learn, and when school starts, I have to advocate,
advocate, advocate.
• I can hide my situation or I can broadcast it to the world.
The more people know, the better off we all are. That’s
why I started Strides for Sarah in 2009 (this year’s
fundraiser is scheduled for October 23 in San Antonio).
It’s up to you to tell people. You are not alone. There is so
much hope. I welcome anyone to ask me about my daughter.