I just got back from the annual symposium that I've gone to since 11th grade with my best friend, Cecilia.
Back story: Cecilia's little brother, David Aaron, died in 1999 from a leukodystrophy called Krabbe (crab-A) Disease. It is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems. For more details about the disease, you can visit www.huntershope.org. They explain it way better than I can. Jim Kelly, former Buffalo Bill quarterback and Hall of Famer, and his wife, Jill, also had a child with the disease. Named for their son, Hunter, they started the Hunter's Hope organization to reach out to families to give them support and love, to doctors to encourage research and to the public to spread awareness. So, 12 years ago, they decided to bring everyone together for a symposium; to let the families meet other families, talk about their experiences and encourage each other, and to let the families and doctors all get to together to talk about the developments in Universal New Born Screening, and to just learn more about the medical side of leukodystrophies. So there's that.
Cecilia invited me to go with her so she wouldn't be lonely. I had been introduced to the world of Krabbe soon after we solidified our best friend status in 8th grade, so I already knew a little about it and had met a few families who had come into Durham for appointments at Duke. The kids dug a hole in my heart that has only grown since then.
The symposium is one of the ways that I have been able to get involved and lend my helping hand. For the past few years, Cecilia and I have collaborated and put together a slideshow of all the kids for the families to see. It's one simple way to remind everyone what they are there for. The parents, grandparents, and friends always appreciate it, though we can't rightly take credit for it. This year, one of the fathers asked us who did the most work on the project and Cecilia appropriately answered, "The kids." Because, again, they are who the symposium is all about. We just put pictures and names and dates and music together. I'm not sure if I would be able to post the slideshow on here, so if not, I'll add a link to google videos, where it will be posted shortly. I will, however, add some of the pictures that I took this past week.
This is our mandatory beginning-of-the-trip picture!
Here are the doctors in their meeting...
Here they are, paying attention and taking notes.
The fabulous fireplace in the main lodge.
And one of the dining rooms...
Pretty flowers in the Butterfly Garden (but I never saw a butterfly...)
They have these swings placed all along the trails. On the other side of the hill is a beautiful view of the lake...
...which kind of looks like this.
The family room that Cecilia and I put together
The pictures are a little dark, but the Christmas lights wouldn't have the same effect the the overhead lights on...
The 2009 Hunter's Hope bear, Beautiful and Baby Bella, sticking out of Cecilia's bag
Two super cute twins, sisters of a Krabbe boy who was unable to attend due to a bout of pneumonia.
We had face painting... Two of the boys, John and Mikey, got green lizards on their faces.
On Saturday, after families and friends wrote messages on the balloons for the kids who have gone before us, we released them and prayed that they reach them in Heaven.
After the balloon release, we began our walk.
Madison being pushed by her grandmother and followed by her mom.
Dalton being helped by his step-dad and followed by his mom.
Chance with his mom and grandmother.
Sandrine being pushed by her mom.
Laura being helped by her dad, followed by her mom and sister.
Laura coming down the finish line.
Another view of the beautiful lake and the Lakeside Pavilion where we ate lunch and dinner.
Villa de Cecilia e Jordan (I have no idea what language that is, or if it's even a language... it just sounds cool... I think)
It was a good week, indeed!
(that's where the food court is...) hahaha
