Welcome to our Pursuit for Patterson!
Hey Everyone! Thank you so much for spending a few minutes with us and Debra.org. This organization has been such an amazing support for our new family as we are trying to navigate in the complicated world of EB.
As some of you know, Patterson entered the world with missing skin on his ring finger and thumbs. It seemed minor to us at the time, as he was so healthy otherwise. Shortly after birth we realized it was not as minor as we had thought. Many doctors visits and a biopsy concluded Patterson was born with Recessive Dystrophic Epidermolysis Bullosa.
We were somewhat puzzled and concerned about what this diagnosis would bring. Those feelings will only go away with a cure. However, we have gained many resources to help us thrive in our new world. We have found many online support groups, and of course have our partners at Debra that are a phone call or email away. They intorduced us to so many supplies that we would have been foreign to without their help.
Patterson is just short of his 10 month birthday, and is growing like a weed. He has an amazing sense of humor (like his mom), and is very playful in nature. People always ask us if he is in pain or how he is handling his diagnosis. Patterson owns his diagnosis like a brave boy. He does get fussy at times when we pop blisters or restrain him to change his bandages, but mostly seems annoyed with his parents for stopping his activities. Peter and I, on the other hand, are battling at times with the "what ifs" and unknowns that come along with this disease. We are hopeful that Patterson will stay in mild form and one day see a cure for his condition. The only hope for this, is through creating awareness and fundraising.
In a world full of great causes, thank you for joining ours.
Love to you all,
Annie, Peter, and Baby P
Update: July, 2016
We, as a strong team have succesfully completed the goals we have set for ourselves and all of you. While this specific campaign is coming to a close shortly, our story will never end. We will continue to fight for awarness and a cure for EB. Please continue to follow along with our Story on our facebook page, Pursuit for Patterson. If you yourself are part of a family with a new diagnosis, know this. YOU are not alone, we are all in this together and will be here for you. With SO SO SO much love, thank you from all of us on this side, of Pursuit for Patterson.
Update: May 24th, 2016
Since the launch of P4P on Feb 29th we have recieved an overwhelming show of support and love. Thank you for having the courage to stand by our sides through this journey. We will soon be celebrating Patterson's 1st birthday, and on that day and everyday we have so much to be thankful for. Thank you for supporting every single person who is living with EB, every dollar of every donation is going towards changing lives. For continuous updates please follow us on our facebook page -
Hi, just a quick word from me, Kristy.
While I am physically running the individual races listed below, my efforts would mean very little without my team, that’s you. The goal here is so much bigger than any one race. The goal is make a change in the lives of people who live everyday with EB. The only finish line is one that will result in a pain free life, in being able to run and jump and be whoever you want to be in life and not be held back because the skin that shelters you does not allow for it. That finish line is ultimately a cure.
I will be running a series of 4 trail races, one in the month of April, May, June and July. Trail running is one of my favorite things in life and to be able to use it as a platform to be a voice for EB and to run for those who can’t is beyond humbling.I am so excited to be honoring Patterson and will be sharing details of this journey along the way through our Facebook page at www.facebook.com/pursuitforpatterson , as well as on my personal Instagram page,my handle is (Kristy_Deeds). I will be sharing updates about my training, each race,I will challenge your participation and of course all things about Patterson (aka. Baby P)! We love having you here with us, thank you for matching me stride for stride.
Ready, Set and Go!
- April 3rd: Horse Butte 10 miles - Bend, Oregon - COMPLETE
- May 7th: Smith Rock 15 miles(25k)- Terrenonne, Oregon-COMPLETE
- June 5th: Run For The Hills (30k)- Corvallis, Oregon - COMPLETE
- July 10th: Mt.Hood 31 miles(50k)- Mt. Hood, Oregon - COMPLETE
Please click the button on the right of the page to complete your donation. Every little bit helps us get closer to a cure for The Worse Disease You’ve Never Heard Of. Did you know that of those born with EB in 2014, 22% are no longer with us? That's why we count on the support of people just like you: Because the cost of doing nothing is too great.
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