Raising money to fight PH on Mimi's 14th birthday weekend, marking a decade with PH
After 3 months of terrifying events, misdiagnosed as a sezuire disorder Sean and I received the news of a correct diagnoses. Mimi was in right heart failure caused by untreated idiopathic pulmonary hypertension. We were told it was miraculous that she was diagnosed and alive. She would require intense medical monitoring and life-sustaining medication for ever, or until a cure. Mimi and the rest of our family has been through and seen a lot in the decade post diagnosis, but today she thrives! She is the best we have ever seen her with hospital stays now and infrequent occurrance where once they were monthly. Mimi dances on a competitive dance team, does well in school and is a caring and compassionate "old soul." Our family is stronger and have taken every opportunity to become better people since her diagnosis. We've banded together and supported each other, and hopefully do so with our family, friends, and community.
While Mimi is doing exceptionally well, she is a rare example of how most experience this terrible and life-threatening and progressive heart and lung disease. We've seen the progress and development in treatments and medical therapies and we know our fundraising dollars do move the needle of progress. Progress though is not enough so we will continue to push and fundraise and support the PHA in hopes that one day, there will be a cure. It is devastating that we hear of kids and adults still requiring double lung and heart transplants in the end stage of this disease, although thankful at the same time.
Thank you for supporting my family and our team in the PHight against Pulmonary Hypertension (PH)! PH can affect anyone of any age, and it is a chronic and life-changing disease that can lead to right heart failure if left untreated. The Pulmonary Hypertension Association (PHA) is focused on extending and improving the lives of those affected by PH. Your donation will support that very work in a variety of ways including research for new treatments, resources for patient support groups and access to conferences and symposiums for patients and PH medical professionals.
Please consider making a donation to my page, and thank you for all you do to help PHA advance its vision of a world without PH, empowered by hope.
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