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Thanatophoric Skeletal Dysplasia with Ashequka Lacey\nAshequka Lacey is a fierce mama bear to Jakobi who was born with thanatophoric skeletal dysplasia which results from a mutation in the FGFR3 gene. Thanatophoric dwarfism is a severe skeletal disorder, but Jakobi has as much strength and determination in his little body as his mom.\xa0\n\nEPISODE HIGHLIGHTS\nTell me about Jakobi.\n> Jakobi is 18 months old and was born with a rare form of dwarfism called thanatophoric skeletal dysplasia. The gene mutation resulted in short limbs, a small rib cage and small lungs, so he is ventilator dependent. At 20 weeks pregnant, I found out there were abnormalities when I went for a gender scan. Another ultrasound was done to take measurements and although they weren't sure about what type of dwarfism Jakobi had, the doctor let me know that it was lethal and they advised I terminate the pregnancy.\xa0\nWhat happened after he was born?\nDid Jakobi's birth bring a force out in you?\nWhat happened when you got to bring Jakobi home?\nHow has Jakobi impacted Ameir's development?\nHow has Jakobi changed you?\nCan you tell us about your book?\nWhat do you want people to know about your family?\n\nLINKS AND RESOURCES MENTIONED\nJakobi Bays IG\nhttps://www.instagram.com/babybays19\nJakobi and Me Book\njakobiandmebook.com\nJakobi's GoFundMe\nhttps://www.gofundme.com/f/jakobis-need\nJakobi's Amazon Wishlist\n https://www.amazon.com/hz/wishlist/ls/A5HHKM6B3E2Z?ref\n\nTUNE INTO THE ONCE UPON A GENE PODCAST\nSpotify\nhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7\n Apple Podcasts\n https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347\nStitcher\nhttps://www.stitcher.com/podcast/once-upon-a-gene\nOvercast\n https://overcast.fm/itunes1485249347/once-upon-a-gene\n\nCONNECT WITH EFFIE PARKS\nWebsite\nhttps://effieparks.com/\nTwitter\nhttps://twitter.com/OnceUponAGene\nInstagram\n https://www.instagram.com/onceuponagene.podcast/?hl=en\nBuilt Ford Tough Facebook Group\nhttps://www.facebook.com/groups/1877643259173346/