In July of 2013, there will be a big group of specialists to come together at a Children's Hospital in Houston, Texas to start a great research for Goltz Syndrome. Goltz is an ectodermal dysplasia syndrome that is rare and affects the cells that make up the hair, nails, teeth, skin, bone structure, and some organs in the affected person. Most of the affected are females though there are some males out there. Some of the main symptoms are missing/frail teeth, thin hair/bald spots, red lines/patches on the skin, sensitivity to heat/cold, loss of sweat glands, cleft palms and feet, fused fingers and toes, slow weight gain, small stature, issues with the eyes and ears and sinus/throat anatomy, papillomas, fragile/thin skin, missing fingers and toes, and in some cases cognitive issues. There is a wide arrangement of symptoms, meaning some people that are affected just have some slight skin and teeth issues while others have just about every symptom.
Emma was born with Goltz in 2005. She has had many surgeries over her 7 years of life and I'm expecting she'll need to have more as she grows. Most doctors that we have seen had no clue what Goltz was until they meet Emma. This research is very necessary and it has gotten us, along with our Goltz Family, so excited! It's a once-in-a-lifetime opportunity to be part of the first families to kick-off this much needed research and we need YOUR help. Please help us raise the money we need to get us to Houston, Texas in July. Help us spread the word about Goltz and, if not find a cure, find a way to lessen so many of the symptoms and make the lives of those touched by Goltz a little easier.
Every donation made will help us get to our destination - Goltz Research in Houston, Texas, July 22 & 23, 2013. The money raised is going to help pay for our transportation, our hotel stays, and meals. In addition to the Goltz Research, the next day starts the NFED's Family Conference. We went to our first one last year that was held in Orlando, Florida. I cannot begin to describe how it felt to hug the other parents of these terrific kids that share my Emma's syndrome. Not to mention the joy I found just watching Emma making friends with the other girls that are just like her. My heart was overflowing with joy & wonder at how much these girls have to offer, not only each other, but to the rest of the world. And their parents... I know their feelings and they know mine. They are our family. Emma and I cannot wait to be able to share another few days with them. And if you're wondering if we really need the whole $2,000.00 that we're wanting to raise, I can only tell you that without it we won't get there and ALL the money that is left over will be given to the NFED in honor of Emma and all of our supporters. The NFED helps so many kids that have a syndrome under Ectodermal Dysplasias, not just Goltz. They can only do this with the support of others & their donations & time. The money raised will not go unused.
Please, be a part of our adventure as we are "Going for the Goltz!"!
With so much love & support we ended up raising a little over $3,000.00 for this trip!! Part of that was from a benefit concert that a great friend of mine put on for us. Complete with Star Wars Stormtroopers, Boba Fett, & Darth Vader. The concert was given by a local VA band, Amethyst Heart & also The Yellow Tie Guy. It was a fantastic concert & brought a lot of joy to more than just Emma.
With most of the costs taken up with the hotel stay, registration costs, & flight cost, we have actually used up a good amount of this money. THANK YOU for making this happen! I talked with admin for the NFED & the remaining amount (TBD) will be donated directly to the Goltz Research Project! :) I've already spent the better part of this week answering all the surveys the many specialists had for us to complete prior to our conference. There are the areas that are going to be evaluated while we are there; Dermatology, Genetics, Opthalmology, Hand Surgery, Adolescent Gynecology, GI/Nutrition, Cognitive, and Dental. That's a lot of stuff to cram into 2 1/2 days, but it shall be done! :)
No comments:
Post a Comment