Optional question where you can tell us more about you, your child, your reasons to be here, or simply introduce yourself.
My 7 year-old daughter, Emily, was diagnosed with Rhabdomyosarcoma in January of 2007. She finished treatment in Nov. of 07 and was doing great until she relapsed in May of 2008. She passed away on June 24, 2008. Along with another family that also lost their daughter to Rhabdo, we have developed The Butterfly Fund to raise money for childhood cancer research.
We have a new PAC2 member looking for advice on Rhabdo if you have time to connect with her....Marci Miess
Thanks....hope you are doing well....
Hi Misty. I see you're in contact with my mom. Fabulous! I noticed you asked if there was any media at the treelighting in DC last night. We were there...no media. However, we're going to attend again next year...and I worked in TV news in DC for 6 years. So, I've got contacts and will see to it that the event is covered next year.
Good morning, Thanks for your phone number. I may not get you called until after Christmas, but I WILL call. I know that Laura would love to meet you, but we will be very busy while they are here. In fact, to do something different this year, we are spending Dec. 21-23 in Pigeon Forge.......Dollywood, etc. Blessings to your family. We wil talk soon. Lala
I would like to help with anything you need help with. Can we get in phone contact when we return to Knoxville? Laura is going to working on a MileStone Walk here in the Norfolk area. She wants to know if one may be planned for Knoxville?
I am so sorry for the loss of Emily. She is absolutely beautiful. I, too, lost my precious daughter to rhabdo. No child should have to endure what our children suffered. Do you have a website for The Butterfly Fund. I would love more information.
Misty, I know about you guys because my husband and I are from Knoxville (he's in the Navy). My parents live off of Bluegrass and Ebeneezer. Mom watches Channel 10, so she told me when Emily passed away. Do you guys know Laura Nutzell? I worked with her years ago at HGTV.
I saw what you guys did with for Operation Christmas Child. Emily's Butterfly Boxes were beautiful! I'm thinking of approaching our local school next year about doing something like that in honor of our son.