Courtney's Excursion for Progeria

My name is Courtney Arciaga, I’m 32 years old and was born with a very rare condition, Progeria.  I was born a normal healthy baby then around age 3 my parents noticed some irregularities in my growth.  The Doctors eventually diagnosed me with Progeria.  Progeria is a progressive genetic disorder that causes children to age rapidly beginning their first two years of life.  The average life expectancy for a child with progeria is about 13 years, but some live 29 years or longer.  The Doctors told my parents that I would live until approximately 18.  Well I fooled them and beat the odds and I’m now 32.  However, not without a lot of medical challenges.  I’ve had many operations for scoliosis, and 3 years ago, I had a collapsed lung and am now tied to an oxygen tank. 

Enough with the the medical stuff.  Unlike a lot of Progeria kids, I have hair, but I am small.  A family friend once said that I was small, special and cute.  And I’m tough.  I grew up with two big, and I mean big brothers who treated me like their friends on the football team.  My Dad, a football and wrestling coach thought I was one of his athletes, and my mom made sure I had the opportunities that every other kid had.  I had a great high school experience.  I played soccer, softball, and I was voted Queen of the royalty court during homecoming my senior year.  As an adult I worked.   I was a crossing guard for an elementary school, and worked in a movie theater as an usher.  That was my favorite job because I saw a lot of people and was part of a team.

 

 

I mentioned that the condition was rare, maybe 30 of us in the world.  As I was growing up the Sunshine Foundation would take me and my family to several locations around the country where we would meet with other Progeria kids that were like me.  It helped with self-esteem that there were others like me and I developed some great friends.  However, those opportunities are no longer available.

So, the reason for my campaign.  I have many limitations.  I want to be independent but there are some real realities with my condition.  I’m only 4’ tall and weigh 70lbs.  And with my collapsed lung I’m tied to an oxygen tank that is 20% my weight.  I need to be cared for so I live with my parents and I can’t do a lot of things that other adult women my age can do.  Don’t get me wrong, I’m happy and tough.  Another family friend told me I told me I was still small, but strong and beautiful. 

Because of my lung, I can’t fly but I dream about traveling on a cruise ship .  I can’t fly because of my collapsed lung. Therefore, I’ll need to sail on a boat with medical facilities and plan my trip so I always know where I could find medical help and keep my oxygen tanks full. I need to have people watching my back so I need to have a caretaker with me and go with a group, like a cruise ship so I don’t get lost.  I can’t work, so therefore the Campaign.  I would love to cruise to  Hawaii and around the islands.

My goal is to create an awareness about this rare condition and show the world that we can live a normal life with accommodations.  Hopefully, my efforts will give other Progeria kids and adults HOPE that thy also can live productive and happy lives as I have.  I want to develop a Facebook page sharing my experiences, posting pictures and sharing my experiences.  I am a public speaker and on many occasions, have been asked to share my experiences with groups.  I will volunteer to do that during my excursions.  Cruises are always looking for speakers and entertainment.  Then when I return, I may write a book on my life with Progeria and continue being a public speaker and ambassador for others with Progeria.

Hope you can help me out, God Bless, Courtney.