You do not have to have EB or have a child with EB to be moved by the devastation of the disorder and make a difference in the EB community. In fact, a number of our supporters and donors have no personal connection to EB at all! It would be easy for people unaffected personally by EB to hear of the stories of these abandoned children around the world and feel sympathetic, maybe even express empathy somehow, and then move on and continue with their lives, unchanged. And many do...but not all.
We are grateful for every single one of our supporters, and this group has an extra special place in our hearts. One of these individuals, a woman who has been a loyal supporter and donor to EB Promise in several ways, shares her story...
Laura: What is your affiliation to EB?
Melanie: I had never heard of EB until last year when a close friend of my daughter had a baby diagnosed with EB. I then started doing research and came across the EB Promise website.
Laura: Why is EB Promise important to you?
Melanie: Truthfully, reading through the EB Promise website about the orphans for the first time just touched my heart. When my daughter first told me about her friend, she told me how strong she is. Her precious baby is blessed with strong, loving parents who are going to be there for him, care lovingly for him and advocate for him with his medical team and others. We are fortunate to live in a time and in a country where there is the real promise of developing new treatments. Children in an orphanage in another county have no parent/loved one to provide that kind of care and loving devotion. As EB is rare, caregivers lack knowledge of EB and how to care for it, and lack medical treatment and supplies to manage it properly. Without EB Promise, these children would not have an opportunity to be adopted by a loving family. I continue to be both humbled and impressed with the work Laura, joined by her board, have accomplished in a short time introducing these forgotten children on the website, and advocating for and making a difference in their lives.
Laura: What has your experience of donating to EB Promise been like so far?
Melanie: EB Promise makes it easy to donate via PayPal or by purchasing items via the Amazon wishlist. It is a blessing to be a small part of providing supplies and funds to help these children and those who care for them. But the best thing is to receive an update that supplies and instructions (in their language!) are on the way to a child, or an incredible family who is willing to open their heart and home via adoption!
Laura: What does the EB community mean to you?
Melanie: One of the best uses of technology has been to bring people together and create “communities” that otherwise would otherwise not exist. I can only imagine that a family/caregiver/friend loving and caring for someone with EB would be comforted to know that they are not alone, there are opportunities to connect with others sharing the same experiences, and there is support from a group that truly understands. I cannot personally understand the daily challenges faced by the EB community, but I can be one of many who are praying for those with EB, and supporting research - that EB Promise has spotlighted - in the hopes there are new treatments available soon.