My name is Susan Miller. My youngest daughter, Meghan, is 18. She’s beautiful but doesn’t like me to say it, so instead let me describe her for you. She has a river of red hair that contrasts with her pale white skin, so clear she looks like a fairy-tale character but she’s a teen; take my word for it.
Meghan has POTS. Standing is a challenge. Walking is a challenge. For her, even eating is a challenge. It takes all the energy she has to get dressed and get out the door. Simply thinking and reading make her dizzy. I have watched as she struggled to maintain a school life and a social life and my heart broke as I saw those slip away. This is a pain that I can’t begin to describe. Watching her body become weaker and activity become more challenging, my resolve to find a doctor, to find help, intensified.
So yes, our family chased a diagnosis and treatment for years until it became the whole focus of our lives. I share those doctors office memories, and there are too many of them. Specialist after specialist knew something was wrong but no one was able to determine just what it was or how to make Meghan well.
After she was finally diagnosed with POTS in 2010 we couldn’t find a doctor who knew how to treat her, or one who was able to see us in less than 15 months! It is unbearable to be unable to help your child. We grew increasingly frustrated.
Meghan worked through the various treatments, some of which did nothing, some of which made her worse. However, as she became weaker she grew more determined: POTS would NOT rule her life. Finally, in June 2011, Meghan saw a leading expert. Her new treatment brought promise and hope.
And this is where I fall in love with my little girl all over again. She asked me and my husband, Mark, to help her start a fund to educate doctors about this disorder so that no one else has to follow the path she had to take to find proper treatment.
Her “fund” has grown into a full-blown foundation, dedicated to helping everyone affected by this life altering disorder. Meghan makes no small plans. I watch as she grows up too fast, too hard, but with grace and determination. I am so proud of her.
We at Red Lily Foundation cannot do this without your support. Please help us in our mission to help those who are suffering. We need your financial support to fund research and your emotional support to spread the word. Thank you.
Sue Miller | March 2012
5K Run/Walk To STAND was a GREAT SUCCESS!
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