Sanfilippo Syndrome

‘He went into a silent seizure. We heard ‘code blue’ over the loudspeakers. ‘If it’s his time, let him go.’ My mama heart just knew.’: Mom loses son to fatal Sanfilippo syndrome, ‘God entrusted me with the most beautiful human’

“We knew the symptoms would get worse. That one day, the smile that made my heart flutter would lose its spark. We were on ‘borrowed time.’ The parademics tried to resuscitate him. His heart stopped beating 3 times. Until his very last breath, Lucas made sure we had the time we all needed to know he was at peace.”

‘Sadie is 3. The clock will turn back. Each minute, we’re closer to the dreaded day she begins regressing.’: Newborn diagnosed with Childhood Alzheimer’s, ‘she is the greatest tragedy and blessing’

“Sadie’s birthday was such a bittersweet day. We saw all our hopes and dreams vanish. She is so smart, but we know this will all change soon. Before Sadie was born, we dreamed of her playing sports, helping her get ready for prom, college, and her dad walking her down the aisle. Today, we dream our sweet girl lives past the age of 14. We knew we had to fight this.”

‘Is this a nightmare?’ We said goodbye, not knowing if she’d recognize us again. Our sweet, perfect girl was dying.’: Mom ‘crushed’ by Childhood Alzheimer’s diagnosis, ‘We spoil her every day’

“5 hours after she was born, they needed life-flighted her to another hospital. ‘Your baby is breathing a hundred breaths per minute.’ I was numb. She stayed on oxygen for two months, but there was still no diagnosis. Her file read, ‘Unknown respiratory issues at birth.’ I felt hopeless for answers.”

‘I’m waiting for my daughter to die. Every day I wake up, she might not.’: Mom gives birth to ‘rainbow baby’ with ‘rare, terminal’ Sanfilippo syndrome, makes ‘each day count’

“She went from surpassing all her milestones to not being able to walk, drink, or eat. I was tired of going home from the hospital with no answers, the typical run around from doctors. One day, with 10 residents, 5 doctors, and 4 nurses in front of me, I said, and I quote, ‘Discharge her again and I promise I’ll sue every single person standing in this room.’ Needless to say, they ran every test. I now know that instead of her burying me, I’ll be burying her.”

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