I wanted to take the chance to tell you all about The Butterfly Fund (http://www.thebutterflyfund.org/). They are a non-profit out of CA, run by the amazing Laurie Sterner! We have been helped out many times from them, starting with supplies back when Raul was still in Romania. Most recently they set up the registries of items we were in need of, and Laurie wrote a wonderful story on us (http://storify.com/lauriesterner/someone-i-think-you-should-meet-1). In between those we have received many packages of EB safe clothes, toys, linens, etc.
At Christmas time they did an amazing event called "The Secret Stocking Project" where people signed up to purchase gifts for children, and their siblings, fighting catastrophic illnesses. Raul was also able to participate in that program! I know SO many families were positively impacted by that program, and I hope The Butterfly Fund gets enough support to be able to continue the project next Christmas!
Today we were surprised by two boxes waiting at our doorstep! We received
toys, books, super soft bamboo crib sheets, a temporal thermometer, and adorable socks with butterflies! Also included was an adorable cow-hooded towel, complete with a tail! Raul LOVES his cow towel, and wore it over his clothes through dinner and now playing upstairs with his cars!
If you are looking for a worthy charity to give to, please help support The Butterfly Fund! They do amazing things for families with sick children (especially EB), and deeply care about their work! Thank you to The Butterfly Fund for all you do, we truly appreciate it!