Pediatric hospice is a choice no parent should have to make, but with Sanfilippo Syndrome, that’s a choice we didn’t get to avoid.
Follow us on IG to learn more (@haidynshope)
@marcuslemonis I emailed you 🫶🏼We went to @CampingWorld this week and Haidyn LOVED this 5th wheel/toy hauler (plus it fits her wheelchair) - hoping we can make something work for trade 🤞🏻 and get back to traveling with our girl while we can + sharing our adventures 🦋
Hoping we can create a plan with @CampingWorld and travel with our girl again!
This gently used 5th wheel/toy hauler would be perfect for our medically complex babe. She loved it. Thank you @marcuslemonis for commenting on our IG & inspiring us to see if we can collab with CW. 🫶🏼
@tiktokcreators
I run the account @haidynshope. It was permanently banned. No option to appeal. I have not violated any guidelines & I am 31 years old.
I had almost 700K followers & shared about my journey with my daughter’s diagnosis of childhood dementia/Sanfilippo syndrome.
She used to be able to talk, sing, & play like a typical child and by age 7 she has lost her voice, losing her ability to walk, suffering seizures and progressive brain damage from a fatal childhood form of dementia known as Sanfilippo Syndrome. @instagram handle is @haidynshope
Ever heard of childhood dementia?
Haidyn is 7 with a rare & terminal disease known as Sanfilippo Syndrome. We had a life diary on @TikTok with over 680,000 followers before being banned unjustly.
@instagram : @haidynshope
@people ✨WATCH VIDEO✨ how do we stop the discrimination against children like my daughter with a disability & terminal illness on TikTok? Ableist app users mass reporting creator content and creators being permanently banned unjustly by @tiktok 🚨
@YourAnonNews ✨watch video✨ how do we stop the discrimination towards children like my daughter with a disability & terminal illness on @tiktok? Mass reporting by ableist app users getting creators banned on a “safe environment” platform.
@TMZ ✨Watch VIDEO✨ how do we stop the allowance of discrimination towards children like my daughter with a disability and terminal illness on @tiktok ?how does this continue to happen from mass reporting by ableist app users?
@people we need @tiktok_us to see this! Stop the unjust ban of creator accounts with disabilities or terminal illnesses from mass reporting and no option to appeal. What about the safe environment and right to appeal your policy states?
@KrisKling we need @tiktok_us to see this! Stop the unjust ban of creator accounts with disabilities or terminal illnesses from mass reporting and no option to appeal. What about the safe environment and right to appeal your policy states?
@WSJ we need @tiktok_us to see this! Stop the unjust ban of creator accounts with disabilities or terminal illnesses from mass reporting and no option to appeal. What about the safe environment and right to appeal your policy states?
@nytimes we need @tiktok_us to see this! Stop the unjust ban of creator accounts with disabilities or terminal illnesses from mass reporting and no option to appeal. What about the safe environment and right to appeal your policy states?