Prettiest hair in the world (mama thinks so)! ✨
@marcuslemonis how can we put our minds and creativity together to createrenovate RV’s to provide an easier, accessible and memorable experience for more familiesThe ideas and possibilities seem limitless!I know tha
PLEASE SHARE 💜🌈🦄Haidyn’s Extraordinary Garden called, “Sanfilippo Syndrome.”Written by, ME! 💜The story of Haidyn’s Extraordinary Garden teaches children about Sanfilippo Syndrome and the differences that make ea
afety first for our sweet girl! 🥰🩷 #sleepsafebed #trampolinebed #travel #campingworldpartner #disability #safety
A girl after my own heart 💜 Sunshine, fresh air and a good daddy make the world feel a little easier to take in. 🫶🏼Sometimes, when Haidyn has hard days, her daddy and I will take her outside to try the fresh air.
A form of Childhood Dementia ✨What is Sanfilippo SyndromeImagine Alzheimer’s and dementia, but in children.In a nutshell, that’s what every family of children with Sanfilippo Syndrome faces.Four subtypes of Sanfilip
She may no longer be able to talk, walk, or play like she used to but we are thankful that we are still able to take her to the beach 4 years later. 💜
She loves hearing how pretty she is. 💜🫶🏼
2022 • You were the hardest year YET.Sanfilippo Syndrome showed it’s ugly face in more ways than we could have imagined it would have, thus far, but we are still standing.HAIDYN IS STILL STANDING.RecapHaidyn receive
Yes, that’s a @wonderfoldwagon with a special tomato seat to help keep Haidyn comfy and safe on our walks. 💜Sanfilippo Syndrome is a rare disease. It is a terminal, neurodegenerative, metabolic disorder. Because he
Oh how much she has lost in the last few years, but this. LOVE. She still knows LOVE and remembers how to show it - whether it be giving us kisses or her favorite toys. 🥹🥰#love #kisses #sanfilipposyndrome #childho
Not one 🙌🏻👏🏻Sharing Haidyn’s journey has been bittersweet. We have gained a community of family, friends and strangers that become friends. It has been a healing and almost therapeutic form of self care and copi
Break the stigma on ✨HOSPICE✨I avoided making this phone call for so long, and it was one of the hardest I’ve ever made - but little did I know how much of a blessing her hospice team would be to our family. 💜✨🦋
BLESSED 🦋✨Thank you SO MUCH!TikTokForACure.com to donate 💗The goal is $1Million ✨WE LOVE Y’ALL & WE COULDN’T DO THIS WITHOUT YOU. I WILL SHOUT IT EVERY SINGLE DAY!💕#tiktokforacure #instagramforacure
Bittersweet. 💜💔🫶🏼#sanfilipposyndrome #childhooddementia #story #storytime #advocate #awareness #journey #joy #grief #meaning #moments #reality #vlog #motherhood #raredisease #legacy #genetics #bittersweet #love
122.@campingworld #campingworldpartner
Something beautiful 🤩 I hope she continues to clap her hands when she’s happy for years to come 🦋#clapping #clapyourhands #happy #joy #sanfilipposyndrome #braindamage #childhooddementia #love #motorskills #ifyoure
