Lissencephaly

‘I ran through the door screaming, ‘Joe!’ My heart sunk. My girl was telling me goodbye, I just didn’t know it.’: Baby passes due to Miller Dieker syndrome, ‘It’s not her death that changed me, but her very existence’

“The hardest thing was breaking our son’s heart. After shedding tears, he proudly wore his ‘Big Brother’ shirt the next day. He told me, ‘Even if sissy looks funny, I’m going to love her just the same. And if anyone makes fun of her, I’ll tell them she is who she is and we love her.’”

‘It is ok darling girl, mummy and daddy love you.’ She took her last breaths in our arms.’: 10-month-old baby girl dies from incurable brain condition Miller Dieker Syndrome, ‘She had a life well lived’

“My husband said, ‘We want our baby to feel the sun on her cheeks, the wind in her hair, the love all around her.’ And she really did. Lily’s smiles are the best thing I will ever see in my lifetime. I know that. We cuddled her until she was gone. I was sobbing, crying out, ’my baby, my baby!’ We bathed her and spent one last night together. She looked so peaceful, like she was sleeping.”

‘My husband was fuming. I was BORN to be her mom. She is here to prove everyone wrong.’: Daughter diagnosed with ‘extremely rare condition’ Lissencephaly, family ‘cheering for her every step of the way’

“In the coldest bedside manner alive, the doctor said, ‘There is no cure. If she lives, she’ll stop mentally developing at 2 months old. Here’s some paperwork. Any questions?’ I stared at him, my body slowly over heating. I told my husband to get me out of there. I looked up at the sky and thought, ‘Well, here we go.’”

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