“As time passed, I saw major changes in my once happy, carefree child. He was withdrawn and started to not like playing with his siblings or classmates. The doctor told me it was ‘just a side effect.’ My mom gut told me something wasn’t right.”
‘Your son has the worst epilepsy I’ve ever seen.’ It’s insane to have doctors ask how to treat your child.’: Mom shares son’s journey with Epilepsy through misdiagnoses, mistreatment to 3 years seizure free
‘My husband texted our family, ‘She’s out and healthy.’ It was before we knew any different.’: Adoptee traverses first time motherhood with medically complex child, KCNQ2 genetic mutation
“As I watched my newborn having a seizure, my empty womb could feel those movements. I knew in my gut she’d had them before, inside of me, the place she was supposed to be safe.”
‘Here he comes,’ my OB said. The entire room fell into an ear-piercing silence. ‘Are you aware your son has abnormalities?’: Young mom celebrates ‘one in a million’ son born with limb differences
“I couldn’t find my voice. My brain was still processing. She placed him on my chest. He was so warm, so beautiful. As I took him in, the film ‘Wonde’r I’d watched during pregnancy flashed. I’d turned to my best friend and said, ‘I could never be ashamed of my child if they were born special. That’s all the more reason to treasure them.’ Gratitude filled my heart. I was chosen for this.”
‘She’ll be in a wheelchair by 40 and you’ll end up her caretaker.’ I accomplished everything his dad said I COULDN’T do.’: Wife with cerebral palsy, epilepsy, finds love, defies all expectations
“My husband’s dad gave him a book about cerebral palsy, probably written by a doctor who retired in 1975. I read it because I wanted to know what my life could’ve looked like. But my husband NEVER did.”
‘WHAT’S GOING ON?’ The nurse said, ‘Everyone is freaking out! His blood alcohol level is so high!’ He’d only consumed a piece of chocolate cake.’: Widow raises awareness about Auto-Brewery Syndrome after husband’s long road to diagnosis
“Donato was pulled over and arrested for a DUI. I asked the officer, ‘How can someone who WASN’T drinking have a breath alcohol level 3 times the legal limit?’ We were confused; doctors were confused. Even in the greatest city in the world, no one could figure out what was wrong with him.”
‘Why Andie have seizures?’ Seeing her so worried, I wanted to answer all her questions.’: Mom of daughter with Dravet Syndrome writes children’s book about seizures, ‘I was inspired by my girls’
“‘Andie is acting strange.’ Our baby’s left arm and leg were rhythmically jerking. After an hour, she’d not stopped seizing. ‘Call 911!’ In a matter of minutes, our future shattered.”
‘It doesn’t LOOK like a seizure.’ There are only 35 people in the whole world with this.’: Mom of son with rare chromosome disorder claims ‘I will never stop advocating for you’
“‘It’s okay, Mommy’s here.’ Your eyes roll back as every muscle in your body tenses. The monitor starts beeping as your oxygen levels drop. You have 50 or more seizures in a day.”
‘If you’re willing to adopt a child like THAT, you’ll move to the top of the list.’: Single woman adopts girl with Down Syndrome, Lennox-Gastaut Syndrome
“‘This child is SICK.’ I remember the pain as I said goodbye to her and walked out of her room, tears streaming down my face. I’ve found until you know the deepest pain, you can never really know the deepest joy.”
‘Sitting on the same couch where we got my mom’s diagnosis, I got my son’s.’: Woman becomes multigenerational caregiver, ‘They were made for each other’
“I laughed in disbelief. At 27, I was a caregiver twice.”
‘The tests came back perfect, so you can stop convulsing. Take some Advil and SUCK IT UP.’: Chronic Lyme Disease warrior details journey, ‘I celebrate my small victories’
“Do you see her? There’s something VERY wrong.’ A group of my friends stood right outside the door, praying for divine intervention.”
