From the beginning of The XA Project, I had a vision in my mind of what joy and exuberance can look like by bringing pediatric patients to inspiring artistic performances. It is not easily measured nor easy to describe adequately. But it can be readily seen on the faces of young children (and those young at heart) and felt viscerally (like the goosebumps you feel when music and dance really touches you). Thanks to Children’s National Medical Center (Thank You Dana Morgan & Sarah Koch) and the John F. Kennedy Center for the Performing Arts (Thank You Jeanette McCune), this vision has become a wonderful reality…
Xochi and I had the honor and privilege to attend the first concert where patients and families from Children’s National Medical Center came to the John F. Kennedy Center for the Performing Arts to watch the Alvin Ailey American Dance Theatre’s concert. It was beyond magical and joyful for everyone who went!
With the permission of her family and CNMC, below are pictures of a lovely girl, Paizlee Naomi, who attended the Alvin Ailey American Dance Theatre concert in January. She radiates such a beautiful smile that immediately brightened my day when I first saw the pictures. The gracious letter written by Paizlee’s mother, Nikki Scurlock, further inspires me to bring the beauty and power of the Arts to ALL sick kids and their families. Here is the letter:
“My daughter Paizlee Naomi was a honored recipient of the Alvin Ailey tickets and a true honor it was. Although the show was on Sunday our exciting experience started way before as soon as we received the email from Dana that we were selected. At that time we were extremely grateful for the opportunity but we had no idea what a grand experience we were headed for. My little Miss Paizlee Naomi is truly one of a kind although she is only four years old her explosive personality is way beyond her years. She loves her modern ballet and tap classes at which she masters. She loves the performing arts so this show fit her like a shoe. I often caution everyone…Watch out for “Ms. Paizlee” world…. a true performer at heart she is 🙂
I would like to rewind back a few months just to shed some light on what we have been through. What we thought to be a routine visit to the Emergency Room turned into a world wind of a nightmare. The visit was a result of a minor febrile seizure. We were discharged around 5pm with instructions to closely monitor Paizlee’s fevers and give continued fever relief. We returned home that evening I finally settled down to get some rest. As I drifted off around 2am my phone rang and the caller ID read Children’s National Medical Center. My heart dropped as I begin to replay the doctors last words before discharge “We ran a few test and if anything is wrong we will give you a call”. We were informed Paizlee had a abnormal EKG and the suspect was Burgada Syndrome a very rare genetic heart syndrome and we needed to come in right away. Over the last few months Paizlee has bravely undergone numerous procedures and test to attempt and rule out this extremely rare syndrome also know as the sudden death syndrome of the heart. This syndrome has no cure and testing is very complex. As a result Paizlee remains under the care of the Cardiologist. We remain hopeful and have overflowing faith this syndrome will be ruled out as a diagnoses. We have completed 40 percent of the testing. However we have a long way to go with extremely intense testing before a rule out is confirmed.
Now fast forward to Sunday….because of your donation my sweet paizlee’s frowns were turned upside down into miles of smiles as she got the opportunity to escape it all as she watched the performance in awe accompanied by her special monkey “cuddles” dressed for the occasion. Thank you for providing Pailzee with the memories of a lifetime. Thanks for making her first trip to the Kennedy Center a true grand experience and one she will never forget. As she entered the Kennedy Center for the first time her eyes lit up with excitement. We felt like movie stars as we were being escorted to one of the front rows of seating. She was truly in her element.
Thank you for proving my sweet Paizlee with this opportunity. Attached are a few pictures we took along the way. Please feel free to use these pictures how you see fit. Its often said pictures speak a million words. My sweet girls is all miles smiles!!! Thank You…Thank You..Thank You for the bottom of my heart.
~ Nikki Scurlock~”
Thank you Nikki for sharing this. The Arts Really Do Touch Hearts! And the Arts can create joyful smiles and beautiful memories for those who are facing difficult medical challenges. Thank you CNMC and the John F. Kennedy Center for the Performing Arts for helping to make this happen! This is just the start of MANY wonderful things to come!