rare

‘Her skin hardened within seconds. It began to split. My husband’s silence scared me.’: Mom says daughter born with Harlequin Ichthyosis is ‘beauty in the purest form’

“He told me, ‘Jennie, I looked in her eyes, and she has the most beautiful soul.’ Broken is the only way to describe the feeling as they placed her in my arms. They had never seen anything like this. She was fine; everything was perfect, and then it wasn’t. But Anna was meant for me, and I for her, and together, we will show the world what true beauty is.”

‘My husband said, ‘My chest hurts. I feel like I’m having a heart attack.’ I started getting angry. He wasn’t demanding answers.’: Mom delivers triplets after finding husband has Chiari Malformation, ‘Each day I am more grateful’

“I called my husband: ‘You have to leave work.’ I couldn’t find the right words, so I just showed him the ultrasound pictures. Three perfectly healthy babies. I felt like I was in a dream. We both sat there for what seemed like the whole afternoon. How would we manage this with his new diagnosis and 2 active boys who were already taking up all of our love and energy?”

‘I don’t really know what to say. Would you like tea?’ I’d just found out my boy wasn’t fine, he’d never be fine, and our life was forever changed.’: Mom’s son diagnosed with rare Vanishing White Matter terminal illness

“He wasn’t able to walk or stand. He was dragging one of his legs and crisscrossing them. Friends and family kept trying to reassure me everything would be okay, but I knew it wouldn’t. I could tell by how the doctors tiptoed around us, the way they were spending so much time with us. ‘It’s progressive, untreatable, incurable, and terminal.’ Despite all this, Sam is joy personified. He is the most incredible person I’ve ever met.”

‘You need to go. Be out in nature.’ She took her last breath and vanished into the air. I’ll never forget those words.’: Man’s soulmate dies of cancer, travels the country with her ashes

“My wife knew being out in nature, amongst the wind and the rock, would be my medicine for grief. Two months after she passed, with a map and her ashes, I set off on a journey that would take me 12 weeks, 19,000 miles. I was on my own, but I wasn’t alone. Her urn sat in the passenger seat as she always did. Her spirit was there, guiding and comforting me.”

‘It’s just cells. Don’t beat yourself up over it.’ That was it. I was sent on my merry way to mourn the loss of my child.’: Woman delivers rainbow baby after losing 7 children

“I remember crawling to the bathroom feeling like a knife was running its way from my navel down, unbeknownst to me that I was even pregnant. I remember sitting there thinking, ‘I’m going to be one of those people on that TV show ‘I Didn’t Know I Was Pregnant’. Then, I felt the release of my dead baby. The ER doctor told me, ‘Oh, use a heating pad for any pain.’ That’s it. No follow up, no resources available, just use a heating pad.”

‘Life with four children with albinism has been quite the adventure.’: Family adopts 4 albino children whose ‘unique, rare’ condition makes ‘our hearts full’

“We stick out in a crowd and draw attention anywhere we go. There are occasions when the pointing, stares, and whispered comments are invasive and annoying. People reach out and touch our children’s hair without asking. We’ve even had to step in and stop strangers from taking selfies with our kids!”

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