{"id":242547,"date":"2021-04-07T09:31:51","date_gmt":"2021-04-07T14:31:51","guid":{"rendered":"https:\/\/www.liveaction.org\/news\/?p=242547"},"modified":"2021-04-06T00:34:14","modified_gmt":"2021-04-06T05:34:14","slug":"mom-awareness-brittle-bone-disease-photos-son","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/mom-awareness-brittle-bone-disease-photos-son\/","title":{"rendered":"Mom raises awareness about brittle bone disease with beautiful photos of son"},"content":{"rendered":"
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A mom to a baby with brittle bone disease \u2014\u00a0Osteogenesis Imperfecta (OI) \u2014\u00a0is raising awareness about the disorder by sharing beautiful, moving photos of her son, Jackson, wearing his cranial helmet in their everyday life.<\/p>\n

At 20 weeks, Abby Storey went to get the routine anatomy scan. She and her husband, Jordan, thought everything was fine. But soon after Jordan left, Storey was given bad news. “Baby\u2019s limbs were measuring below the 5th percentile,” she wrote on her blog<\/a>. “As far as we knew, everything else looked ‘normal’ but we were being referred to a MFM doctor for a more detailed scan. We were nervous, but held out hope for good news in the next scan.”<\/p>\n

After meeting with their maternal-fetal medicine (MFM) specialist, the news only got worse.<\/p>\n

“They saw a number of normal and abnormal things that just didn\u2019t add up to one diagnosis,” she explained. “He had shortened and curved long bones, no fractures, a normal-sized chest, an abnormally shaped skull, club feet, and correctly developing organs. After a run-down of the scan and a very emotional chat about the seriousness of what they found, we were given a packet on Skeletal Dysplasia from our specialist with a referral for a geneticist. The word \u201clethal\u201d was all over this packet, and we felt like we\u2019d been gut-punched but also left hanging without many answers.”<\/p>\n