childhoodalzheimers hashtag performance
Heartbreaking glimpses into young lives affected by early-onset Alzheimer's. Sharing stories, raising awareness, and offering support. Families fight this cruel disease, documenting struggles and seeking hope.
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Clinical trial update. Liv has Mucopolysaccharidosis type 3B, also known as Sanfilippo Syndrome. It’s a form of childhood Alzheimer’s. Time is not on our side, our little girl is getting bigger and we want her so badly to have a treatment option. #sanfilipposyndrome #childhoodalzheimers #lysosomalstoragedisorder #fyp
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Please continue to share Liv’s story. Repost if it touched your heart. Without a cure, she cannot fight on her own, we must continue to fight for Liv and her rare disease siblings. #sanfilipposyndrome #childhoodalzheimers #genetics #specialneeds #specialneedsparenting #fyp #savingliv #specialneedsmom #disabilityawareness #dei
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I promise my intent is never to cry, but my kids have my whole heart, and I can’t help it. Liam is what we call a super sibling to a special needs sister. And he’s amazing. #sanfilipposyndrome #childhoodalzheimers #specialneeds #specialneedsparenting
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If you are truly concerned your child has SF, please visit the Cure Sanfilippo Foundation website for info to bring to the pediatrician. If you’re concerned for a child that is not yours, please do not say anything until you’ve gathered more information and are 99.9% sure. SF is WAY more than a look. I’m here to help guide you in the right direction. You can also repost this video to share it with your followers to reach more people 💜 #sanfilipposyndrome #raredisease #rarebeauty #rare #fyp #genetics #specialneedsmom #childhoodalzheimers
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My daughter Liv has Mucopolysaccharidosis Type 3, a form of childhood dementia. It currently is fatal, with a life expectancy of mid to late teens. If I didn’t find joy in dancing, and the simple wins with Liv, our life would be dark. I’m here to spread joy, awareness and light. #sanfilipposyndrome #childhoodalzheimers #embarassingmom
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Why doesn’t Liv qualify for current trials? Because they are for a different type of Sanfilippo, Type A, and Liv has Type B. #sanfilipposyndrome #childhoodalzheimers #genetics
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you think Death with Dignity should apply to children? Bold take. Except, here’s the thing—kids, especially those with complex medical needs, aren’t capable of making that decision. #deathwithdigity #boldtake #notforkids #medicalethics #disabilityrights #specialneedsparenting #advocacy #protectthevulnerable #ableism #medicallycomplex #fightforlife #childrensrights #qualityoflife #ethicsmatter #parentadvocate #sanfilipposyndrome #disabilityawareness #childhoodalzheimers #lifeworthliving #endoflifecare #humanrights #chronicpancreatitis #standupforspecialneeds
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Replying to @S•bash #curesanfilippo #childhoodalzheimers #raredisease #disabledtiktok #terminalillness
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