OTHERS

Life with Ella-Cephaly

Rare Disease & Syndrome

Kristina Lackey

Ella-Marie's Life story

Ella-Marie was born on February 16, 2017 with severe Microcephaly, Lissencephaly and Hypoplasia of the corpus collosum. We had her diagnosis, but we wanted answers. She has an older brother who was born without a disability. Ella went through genetic testing when she was 2 months old, and when she was 5 months old we had a lead as to why she was born this way. So she underwent a spinal tap, and we found out that our Ella-Marie was born with Phosphoserine Amniotransferase. It’s a very rare genetic disorder that causes no serine or glycine to her brain, as a result of that her brain never grew properly. She wasn’t ever expected to live past 6 months - 1 year. She’s the FIRST child to have PSAT1, get the symptoms from it and survive. Usually once symptoms are present, they pass a few months later. She cannot eat by mouth, so she has a G-Tube. Ella is expected to be non-verbal (she’s already learning to use her voice) and we know for a fact our Ella will never be able to walk. Ella-Marie is a miracle, and I love to share her journey! For a 17 month old baby, she’s kicking butt! Keep it up Ella. We love you❤️

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