My name is Aaron White and I am currently 22 years old. My family found out that I had XLP1 in August 2001, when I was 5 years old. My uncle, David Rodgerson, was diagnosed around the same time. Here is the story of my life since that diagnosis.
My Bone Marrow Transplant was on January 17th, 2002. Lucky for me, my brother was my donor, which made things easier. The transplant was a partial success. I was only given less than half of my chemo. This has left me in an odd situation with a reduced level of donor cells. I average around 20-40% donor cells, with the rest being mine. To my knowledge, I am the only XLP survivor who has had a “mini” transplant. Unfortunately there is no knowledge of how low my donors cell levels can drop and still leave me protected against infections. I have had none of the major common complications post transplant, and I have recovered to a point where I can live a basically normal life. I have even had EBV commonly known as mono, which as many people who have this disease in their family know is commonly fatal. Surprisingly it had little affect on my immune system and my body cleared it naturally.
My current goals for my life include bringing awareness to this rare disease and to find other people to talk with who have experienced XLP. I also hope to show others struggling with XLP or other rare diseases that there is hope at the end of the tunnel. That you can do a lot more then people would suspect of someone who went through so much medically. The few people I have shared my story with at this point in my life have always been surprised. that I have a disease like XLP as in there words “I always seemed like a normal person.” Some of my accomplishments include being able to live an active lifestyle by being a ski instructor, climbing, running, and cycling. I also had the unique opportunity to paddle sprint canoe in Hungary for team Canada and demonstrate our national boat at the war canoe at the 2012 London Olympics.
If you wish to talk about this at all with me I will be using the website my mother and uncle made to share my story and connect with others. I will also be posting a more detailed story of how this has affected my life and things that I have accomplished since then on set website. The link is http://www.xlp.ca/home.html.
UPDATE. Aaron has recently set up a new web site with his story and blog. Please click here.