Send Brystal to Nashville!!

Brystal suffers from a cognitive skin disease known as Epidermolysis Bullosa (EB). She was born without skin on her left leg and foot and has spent her entire life in bandages. There is no cure or treatment for EB and it is so rare only affecting 1 in 50,000 live births. This disease causes her to be in pain every day. Her skin blisters at the slightest touch including her mouth which makes it difficult to eat regular food. She is a trooper dealing with this disease but there is always something new every day. We would love it if we could raise enough money to get to Nashville this summer. I am a single stay at home mom and unable to work because of the amount of care Brystal needs. I had to quit my job when she was born because most daycares didn't know how to deal with this disease and I was worried about the infections and she would get.

Going to the Patient Care Conference (PCC) means so much. Brystal would be able to interact with other children with EB and I would be able to learn more about the possible trials that are happening and maybe she could a part of them! I would also be able to learn about other bandage supplies and creams that I could possibly use on Brystal meanwhile meeting with vendors making life connections. This could help us out immensely. They only do the PCC once every other year and this would be our first year. I would love to have Brystal meet and play with other children, teens and adults with EB. I would like her to see other children that are just like her and to know she is not alone in this and others share her pain. I would also love to meet other EB Moms to find out how they deal with specific issues of our rough daily lives. I could learn so much and maybe find new ways of doing things to make Brystals life some what more comfortable.

If you'd like to learn more about the PCC please go to:
debra.org/pcc2014

No donation is too small and greatly appreciated. Even sharing this for us is more than we could ask for. Thank you! <3

Brayce :)

Donations

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  • Anonymous 
    • $50 
    • 85 mos
  • oksana Naidu 
    • $200 
    • 86 mos
  • Kathy Gaynes 
    • $25 
    • 87 mos
  • Jacque Jewett 
    • $20 
    • 87 mos
  • Anonymous 
    • $500 
    • 87 mos
See all

Organizer

Brayce Brewer 
Organizer
Mesa, AZ
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