Rare disease day

Today is rare disease day. It’s a day that we raise awareness for addysons rare disease and all the other rare diseases. we now know multiple families who are fighting rare diseases. These families are remarkable, strong, amazing, fierce. We are also tired of fighting the Insurance, the Drs, the schools. Tired of searching for a clinical trial to give us hope.

Below are some of the many faces addyson has shown us over the years of fighting her disease.

We are grateful for all the people who have been there for us along this journey. Our family, friends, coworkers and strangers. We have had support ranging from: folks helping with the animals while we are in the hospital, people offering us their guest house while in Philly so we didn’t have to pay hotel expenses, a coworker who moved to VA meet us and treated us to lunch before a major appointment regarding addysons chest wall consult, folks who have quilted her blankets to provide her comfort, photographers who have taken time to come to the hospital and document her journey, a whole team of softball players who provide her with constant support and thank you to everyone who has ever attended an appointment with us. Sometimes you just need a second set of ears. Thanks to Randy’s coworkers who have provided addyson with items to make hospital stays eaiser. We truly couldn’t get by without the help from each and every one of you.

And while we seem to be trending in the wrong direction lately, we still see the good. We see everyone rallying with us to try and find the best path for addyson.

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