Reflecting on Freedom in Philadelphia
As I rode with Harper's family into the city from the Philadelphia airport, the sense of excitement in the car was high. We came to the 'City of Brotherly Love' on two missions, one much more important than the other. Would we be successful?
Philadelphia is the home of Dr. Francis Jensen, Professor and Chair of the Department of Neurology at the University of Pennsylvania. Three years ago, my friend Harper and her family received the devastating news that Harper had CDKL5. CDKL5 is a rare disorder with only 500 known cases worldwide. Her family started a foundation called Hope4Harper to raise awareness and funding for research.
(See more background on Harper and her recent Run4Hope in this post: Amazing Three Year Old Inspires Hope)
So our first mission was finding FREEDOM for Harper, freedom from the seizures caused by a disease she did not choose. We met with Dr. Jensen and her amazing team of clinical researchers. Hope4Harper supports research into learning how to control Harper's seizures, research that Harper's mom Penny notes 'will impact a broader group of those with Epilepsy'. The work being done here is so important to so many people and their families. Meeting the electrophysicist, the Geneticist, a Child Neurologist...it was all so overwhelming yet inspiring! Harper's family was encouraged by the collaborative efforts of the team, and HOPEFUL that Harper's freedom would be found here someday.
(Read more detail on the research from Harper's blog here: Hope4Harper Visits Seizure Research Project Lab in Philadelphia)
The second mission, the one that pales in comparison to the first, was to tour historic Philadelphia with Harper's family. We saw Independence Hall, where the Declaration of Independence was signed in 1776! We visited the remaining foundation of President George Washington's house, the first President of the United States. Next up was the Liberty Bell, which Harper and I tried to ring, thinking that would be fun! Little did we know it no longer makes any sound. The crack that started with the very first ring became irreparable to the point of muteness!
We also found time to stroll through downtown and take in the local cuisine. Cheese steak sandwiches at Steve's Prince of Steaks were new to me, and they looked delicious. Of course, I don't need food, but I want the best for my friends! The people and the culture of the city had my head spinning. I had no idea that over 20% of the residents in Philadelphia have a 'mother' language other than English. Around every corner was a different dialect and a new attraction. Museums, Universities, parks, the row houses, the river, the architecture...I loved it all. Our second mission was complete.
As our time wound down, and we began the journey home, Harper's family reflected on what this city means to them. Philadelphia has long represented freedom to many Americans. Harper's family shares that sentiment, but freedom for Harper is what they are seeking now. The researchers on Harper's team that are working tirelessly in the 'City of Brotherly Love', truly have our love for their efforts. Our hope is alive, but this mission is not yet complete. Please help Hope4Harper in their quest to find freedom for their daughter.
Learn more about Harper and her family: www.hope4harper.com
Contribute to help find a cure: DONATE
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