Ruth Ann Ahnen via Crowdrise
January 14, 2011
BENEFITING: CYSTINOSIS RESEARCH FOUNDATION
EVENT DATE: Sep 17, 2011
Life ain't always beautiful. Sometimes its just plain hard.
But the struggles make you stronger and the changes make you wise.
No life ain't always beautiful. but its a beautiful ride.
-lyrics by Gary Allen
The beautiful young lady in this picture is our daughter Katie. She will be 21 in a couple of short months. Sixteen years ago we almost lost her to a disease we had never heard of before. Katie became very ill and it took many tests and a long hospitization to finally diagnose her with Cystinosis. Cystinosis is a rare genetic disease that affects approximatly 600 children and young adults nationally. It is a metoblic storage disease that presents itself in the kidneys but affects all vital organs. The affects of the disease have resulted in numerous hospital stays and a daily regimin of over 50 pills for many years. Its very difficult to watch your child suffer with a chronic medical condition. Two years ago Katie recieved a kidney from her Dad and her health has improved dramatically. Currently she feels good and is enjoying her freshmen year of college. We are extremely grateful for her much improved medical condition. She still has cystinosis and will continue to take pills to control the disease. She also takes anti-rejection drugs because of her transplant. Despite all that she has endured. She has an amazing outlook on life and a compassionate heart. Her life is full of wonderful friends and a desire to give back. She is currently studying to be a nurse and hopes to work in a childrens hospital.
Katie and others with this disease are my heros. Last year I ran a 50 mile trail race and raised about $3500. This year I will be running again, this time in a 50 mile trail race put on by North Face in Sept of 2011 in Wisconsin to raise money for the Cystinosis Research Foundation (CRF). By sponsoring me, you will be helping to stomp out this disease. 100% of all proceeds will be going to the CRF. Please check out their website (link provided on this web page). I have run many miles over the last year and I am somewhat apprehensive about this distance. Did I run enough? Will I finish? Whenever I doubt my ability to run this distance, I just concentrate on the reason I am doing it...for my daughter, and the support of family and friends. All of us together make a great team!