facial deformities

‘My cheek was swollen. The doctor said, ‘I’ve never seen anything like this before. Your life expectancy is 6 years old.’: Woman gets Facial Infiltrating Lipomatosis diagnosis after 22-year battle

“We were told, ‘The swelling must be from the position she slept in. It’s nothing. It will go away soon.’ Weeks went by, but nothing changed. When puberty hit, my face was growing faster than I was. I had unexplainable headaches and nosebleeds. I was sleeping all day long. Everywhere I went, I got stares, whispers, and pointing fingers.”

‘She wasn’t getting enough air. She was almost gasping and was quite purple. It was pure torture.’: Woman gives birth to baby girl with Treacher Collins Syndrome, ‘Her disability won’t hold her down’

“I noticed her ear looked small, but I chalked it up to the typical squishiness of a newborn. ‘So what? What is the point of showing me her differences?’ She has underdeveloped ears, cheekbones, and jaw that make her appear a little different than most of us. I just stared at her in awe, with nothing but love and admiration.”

‘Why isn’t anyone congratulating me? Sadly, my daughter’s arrival wasn’t celebrated.’: Woman gives birth to baby with Treacher Collins Syndrome, ‘our normal is different but I wouldn’t change it for anything’

“I was excited and ready to meet our baby girl! I realized something was not right. I said, ‘What is happening?’ Why is my husband so confused and scared? Why can’t my mom look at me? Why did my doctor step out? No one said a word. The silence tore me apart. I finally got a glimpse of Bella and… she looked ‘different.’”

‘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.”

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