I have met Congressmen and Senators and even President Obama and Valerie Jarrett. I also have met Bono and The Edge (swoon). However, meeting a fellow rare diseases advocate tops all of those experiences, alright, maybe not the Edge if I am being honest-well, he actually is a rare disease advocate in his own right so... That is why being introduced to Lydia Seiders, Maryland State Ambassador for the National Organization for Rare Diseases (NORD) in the family room at NIH is an indelible memory for me. I could spend hours explaining how awesome she is or how the strength and resiliency of her daughters leaves me speechless, which is hard to do.
Lydia recently asked if she could highlight Hadi's story for the Rare Revolution magazine. I said yes because I was fully aware that she would emphasize the importance of finding a cure for Aplastic Anemia and also would honor my beautiful Hadi.
Check out Lydia's piece by clicking here. Don't you love the sound when you move to the next page?
And yes, you learn something everyday, I had no idea paediatrics was spelled differently in Britain. I am curious at to why.
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