rett syndrome

‘My daughter took her final breath. I felt a sudden surge of energy rush into my body. I carried her downstairs to the gurney.’: Grieving father recalls ‘hardest thing’ he’s ever done, ‘Sophia needed her Daddy one last time’

“When the funeral coordinator arrived, I gently picked Sophia up one last time. I carried her down the stairs to the gurney waiting for her. I made sure she was carefully secure as she was loaded into the van to the funeral home. I was lucky to be her daddy. I still have not grieved from watching my beautiful sweet girl die. I write her name in the shower on the glass with a big heart every day. It’s my way of remembering her.”

‘They laugh when you flap your arms. They think you’re stupid. But you were created special on purpose.’: Mom of daughter with Rett Syndrome details emotional moment grandma’s love quiets her symptoms

“You see, my daughter’s syndrome doesn’t allow you to touch her face or hands. That day, I saw Ivy on the love seat with granny. They both leaned in, foreheads touching, and granny was holding Ivy’s hands and face! Ivy was SMILING and listening to granny quietly speak. ‘You are special. You are good enough. You are different…on purpose.’ No matter the diagnosis or prognosis, I KNEW my Ivy heard granny and understood.”

‘My daughter came home from preschool different. She was biting herself. She stopped speaking, sleeping, playing with toys. I could no longer write it off.’ Mom receives Rett Syndrome diagnosis, told it’s ‘one of the most severe cases’

“I get a call from the geneticist. The call drops 3 separate times. The most important call of our life and I miss it. I sit and wait. My phone rings again. He says, ‘Genetics just confirmed Evie has Rett Syndrome.’ He says, ‘There’s no cure. We can’t change it. You can’t do anything.’ My heart sank. This was serious.”

‘We have a baby who cries for hours, with a mysterious rash. Bright red, with a distinct swirl-like pattern. We had fallen under the radar, but my mama instinct knew we were dealing with more.’

“We were prepared to keep pushing until we were satisfied! Then she paused. ‘Unfortunately I have something else very important to tell you.’ I looked over at Dane, unable to speak. His face was so pale I thought he was going to pass out. My heart now felt like it was going to beat out of my chest.”

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