Thank You!

 

It Was You Who…

Helped me breathe a sigh of relief for the first time in years by sharing helpful information and not passing judgement and writing me off as a paranoid, over-protective parent.

It Was You Who…

Allowed my daughter to smile for the first time in 3 years…not because she was happy that she was ill but because she finally had hope that there was a reason and a treatment for her pain.

It Was You Who…

Introduced me to others who were facing the same situation and provided me a way out of the loneliness experienced by so many caregivers who have nowhere to turn when they need to express their grief.

It Was You Who…

Told me that it was ok to be sad and sometimes afraid. Instead of telling me to “just deal with it”, you held my hand and helped me through it.

It Was You Who…

Gave me peace of mind instead of making me feel like I was crazy for knowing my child well enough to know that something was wrong with her.

It Was You Who…

Made me realize that I didn’t “make this up.”

It Was You Who…

Helped restore my faith in the medical community.

It Was You Who…

Helped me battle insurance companies and navigate the medical red tape to get the tests and treatment that my daughter needed.

It Was You Who…

Helped me stand tall as a Warrior and gave me the time to focus on my child’s mental well-being because I knew that her physical well-being was finally in good hands.

The average time that it takes to diagnose a rare illness is 3 years. 3 years!! Often during this time period, patients see multiple doctors, some of whom unfortunately do not have the awareness or education required about rare illness to truly help their patients. I do not fault those doctors. There are over 7,000 rare illnesses affecting more than 3 million people in the Unites States alone. It is an impossible situation and one that I, like many others, am working to change.

My daughter exhibited symptoms for 3 years. A bone break here, some swelling there, and on some occasions, the inability to stand up, walk or move parts of her body because the pain was simply too intense. I went to multiple doctors who ran multiple tests. For the most part, they were helpful but on the rare occasion, I was viewed as the one with the problem and not my daughter. On one particular occasion, I was suspected of abusing my own child because the doctor could not understand how her vertebrae could be collapsed in the way that it was on its own.

After three years of visits, tests and no relief, I was fortunate enough to meet Dr. Lindberg, Nurse Amy, and finally, Dr. Zhao at Seattle Children’s Hospital and my daughter was finally diagnosed. It is to them and doctors like them that I want to simply say “Thank You”. Your kindness and your work have made it possible to bring some normalcy to our lives and to the lives of countless others. I look forward to a world when every doctor has the time and resources to do the same for their patients, and when the word “rare” can be removed because diagnosis and treatment are commonplace for all.

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