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ONCE UPON A GENE - EPISODE 141\nA Rare Mama Bear - Being a Single Parent and Adopting a Rare Disease Child with Epidermolysis Bullosa\n\nLaura Dellicker is a hardworking mom who adopted a little boy named Salim four years ago. Salim has a rare disease called Epidermolysis Bullosa (EB). Laura shares her story of rare disease adoption and what inspired her decision.\n\nEPISODE HIGHLIGHTS\n\nCan you tell us about Salim?\nMy son Salim is 7 years old and he has two unrelated genetic conditions. I adopted Salim from India four years ago and I was aware of his primary diagnosis of Epidermolysis Bullosa, which means his skin doesn't adhere to his body.\xa0\n\nWhat was your motivation to adopt Salim despite his rare disease?\nI knew I wanted to adopt a child with EB after being involved in the ED world for 10 years prior after my friend's son was born with EB. Moreso, I knew Salim was my son and he just happened to be born on the other side of the world and I just did what I had to do to bring him home.\xa0\n\nWhere have you found support and community?\nThere is a wonderful adoptive community and I have a lot of friends who have adopted kids from India. We've managed to even stay in touch with some of Salim's friends from India. I do sometimes feel a little out of place because there's no one in the adoptive community with either of Salim's genetic conditions, and I've not found another parent who has adopted as a single parent in the rare disease community.\xa0\n\nWhat wisdom do you have for others considering adopting a child with medical complexities?\nKids can look terrifying on paper, but they're so worth it. They mostly need love and family. It's worth it in the joy they have in experiencing the world. This isn't an easy road, but it's worth it and will force you to re-evaluate things and not take things for granted.\n\n\nLINKS & RESOURCES MENTIONED\nEffisode 050 - Global Genes RARE Disease Patient Advocacy Summit\nhttps://effieparks.com/podcast/effisode-050-global-genes-rare-disease-patient-advocacy-summit\nGlobal Genes Patient Advocacy Summit\nhttps://globalgenes.org/event/rare-patient-advocacy-summit/\n@teamsupersalim on Instagram\nhttps://www.instagram.com/teamsupersalim/\n\n\nTUNE INTO THE ONCE UPON A GENE PODCAST\nSpotify\nhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7\nApple Podcasts\nhttps://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347\nStitcher\nhttps://www.stitcher.com/podcast/once-upon-a-gene\nOvercast\nhttps://overcast.fm/itunes1485249347/once-upon-a-gene\n\nCONNECT WITH EFFIE PARKS\nWebsite\nhttps://effieparks.com/\nTwitter\nhttps://twitter.com/OnceUponAGene\nInstagram\nhttps://www.instagram.com/onceuponagene.podcast/?hl=en\nBuilt Ford Tough Facebook Group\nhttps://www.facebook.com/groups/1877643259173346/\nOnce Upon a Gene TV\nhttps://www.thedisordercollection.com/