“My parents sat me down and told me I was going to need surgery. An 8-year-old, I cried and cried. I didn’t want to go in. When I woke in the recovery room, I learned it couldn’t be removed. We were devastated.”
‘The nurse came in as I was flailing. ‘I don’t want to go!’ The ambulance thought I was 80, not 8.’: Woman celebrates 20 years brain tumor free, ‘My hope is to give back’
‘Have you noticed he can’t use the right side of his body?’ The hits kept coming. I was powerless to stop it.’: Woman advocates for son with Refractory Epilepsy, ‘I’m thankful for every milestone’
‘But he doesn’t have it yet,’ they said. YET, YET, YET. The words pierced my soul. Why aren’t you telling me he’s going to be fine? Now, it’s okay to freak out.”
‘How will we tell her sister?’ I held her limp body, kissing her and praying she’d breathe again.’: Baby diagnosed with Lissencephaly, ‘She is a true miracle’
“I said, ‘Something is wrong, I just know it.’ Her body would twitch, eyes blinking faster than you could ever imagine. Her lips making a loud smacking noise. It scared me to death. The questions started to flood my mind…how long did we have with her?”
‘Our baby is going to die.’ Harper spiked a 106-degree fever. ‘She has a 1% chance of making it to her first birthday.’: Mom births miracle baby with Trisomy 18
“The doctor said, ‘These kind of babies do not make it full term and if the baby is born alive, they only live a few days…a week at most.’ Weeks later we were told, ‘We can’t find any markers.’ They couldn’t see any holes in her heart and all of her other signs had disappeared. She looked perfect. My husband and I were lost and confused.”
‘He was dying before my eyes. Doctors said, ‘He must be teething.’ He cried for 18 hours a day.’: Mom births baby with rare neurodegenerative disease, ‘Listen to your gut’
“The doctor glanced at my son’s chart, looked up at me, and said, ‘I’m going to go get you in to see the best pediatrician we have.’ I remember running into her arms saying, ‘Thank you. Thank you for finding something.’”
‘Jack was screaming for over 10 hours, no tears. ‘Did you forget how to hold a baby?’ The nurse took him out of my arms.’: Mom advocates for son with rare epilepsy after multiple misdiagnoses
“A tight smile on my face and a pang in my heart, I joked along, but something felt off. His painful cries stopped, and his little body became rigid with eyes that would no longer focus. I was done trying to not be the overly sensitive mom – it was time to sound some alarms. After only knowing our son for 5 short days, he was taken away on a helicopter in critical condition.”
‘What’s happening to our baby?’ His eyes pinning, we watched in horror as he became unresponsive.’: Twin diagnosed with Sturge-Weber, ‘Our life is a beautiful mess just like everyone else’s’
“His seizures came ROARING back with a vengeance. We unwillingly checked back into hell. We sat by our baby boy’s bedside in a state of utter despair, as he was intubated and unconscious.”
‘He should be institutionalized!’ People wanted to know why we didn’t put him in a home to free up our time.’: Nephew of late uncle with Down syndrome shares his journey, ‘I always knew Kelly’s life mattered’
“He began having seizures. He required a wheelchair, was unable to feed himself, could not use the restroom, and basically became dependent for all of his daily needs. But in the midst of all the changes, Kelly never lost his ability to smile.”
‘Please, make it stop. Don’t take my baby from me!’ The 16 minute helicopter ride felt like an eternity.’: Mom has child with Sturge-Weber Syndrome, ‘I am so honored to be his mom’
“Shortly after the move, our worst nightmare came true. In the car, I noticed he was acting weird. My son was placed on a stretcher with a neck brace, while screaming and crying like I’d never seen him before. I was helpless and hysterical.”
‘The monitor went crazy. Suddenly, there was a half dozen doctors in the room, bagging my son. ‘I’m going to watch him die, aren’t I?’: Boy diagnosed with rare Sturge-Weber Syndrome, ‘A birthmark changed our life’
“He was hitting his milestones. He was happy. He was supposed to beat the odds. One evening, we noticed he wasn’t himself. He wasn’t making eye contact and was whimpering non-stop. We thought it was the heat, so we gave him a cool bath and went to sleep. The next morning, his face turned blue before my eyes. He went limp. The ambulance came and took Noah away. I couldn’t believe it. My baby wasn’t my baby anymore. Watching him fight made me so strong. For him. For us.”
