I’d like you to meet my little girl Maggie. She’s a an easy going and energetic 8 month old. She’s getting pretty close to crawling, she loves her mama, and one of her favorite foods is mashed up beans. She loves to play and move, but she also puts up pretty well with long hours in the van, meeting strangers, and everything else that a life on the road entails.
You’ve probably noticed that she’s also different. Maggie has a very rare genetic disorder called, Focal Dermal Hypoplasia. To give you an idea of how rare it truly is, less than 70 people in the United States share her condition.
Maggie will likely lead a fairly normal life, though not without some challenges. I won’t take the time to describe her symptoms fully (you can learn more about FDH here), but along with having some skin, nail, and hair issues common to her condition, Maggie is hearing impaired in one ear, and basically blind in one eye. It is also very likely that she will need dental prosthetics from early childhood and throughout her life. In spite of these challenges, she's got a lot of things going for her, not least of all a personality that spreads joy to everyone she meets, including her parents who love her to the moon and back.
Margaret sees several doctors, and they’ve been very helpful, but because her condition is so rare, there’s a lot that even they can’t tell us. We want to give our little one the best care possible, and this is where the National Foundation for Ectodermal Dysplasias comes in. FDH is one of nearly 200 types of Ectodermal Dysplasia. The NFED exists to provide support to those affected by Ectodermal Dysplasias. They offer a myriad of resources and also put on an annual Family Conference. The NFED Family Conference affords an opportunity to network with others affected by Ectodermal Dysplasia and to learn from doctors and dentists who are familiar with the special needs and challenges of those affected by these disorders.
My wife and I want to take advantage of the opportunity to attend the Family Conference this year in Falls Church, Virginia as well as participate in an Advocacy Day on Capital Hill, and there’s a way that you can help us get there. I am looking for churches and/or individuals in the Washington, D.C. area to sponsor our attendance to the conference in exchange for concerts (I will even promise to perform some of my newest songs, inspired by Maggie). I would be available to perform Friday night, July 21 and Sabbath morning and evening, July 22. This means up to 3 concerts sponsored by 3 churches/individuals. Here’s what we need to raise:
Travel Cost: $1000
Conference Registration: $500
The deadlines for registration and hotel booking are in mid June, so we’re hoping to find sponsors in the next 2 or 3 weeks. There are a few ways you can help.
1. Contact me if you are interested in booking a concert to sponsor our trip.
2. Share this information with your friends, family, and social networks.
3. Pray with us that God will open the doors for us to attend the conference.
Thank you so much for your support and prayers!
Peace to you,
John & Elisa Millea