mucolipidosis hashtag performance
#Mucolipidosis showcases insights on a rare genetic disorder affecting lysosomal function. Advocates share experiences, research updates, treatment options, community support, awareness campaigns, and personal stories to educate and inspire others.
15.3k
We started out 2024 feeling like Bryce was on the right track health wise and we managed to stay out of the hospital all of virus season. In home nursing was wonderful, she started new therapies, and was thriving. Fast forward to July and our worst nightmare happened. We lost Bryce after a hard battle with Covid. And the entire rest of the year seems like a blur… just trying to get out of bed each day and find the courage to move forward. Praying for a little hope and healing in 2025. #brycealmighty #mucolipidosis #icellawareness #icelldisease #grief #childloss #grievingmom #lifeafterloss #goodbye2024 #2024recap
3.7k
Having Bryce back in our home has been healing. I’m so grateful to @Poppy&Kaylee for sharing her journey. We would not have known about Parting Stone otherwise. Thank you to this community for all the love and support. Sharing Bryce has been the biggest blessing in my life 💜 #brycealmighty #mucolipidosis #icellawareness #grief #childloss #grievingmom #lifeafterloss #partingstone #community
1.1k
Sharing Bryce with the world has brought me so much joy. Connecting with so many different people around the world has been incredible. And being able to help families in the rare disease community is something I’m so grateful for. What a wild ride it has been! Thank you to everyone for loving our Bryce 💜 #brycealmighty #mucolipidosis #icellawareness #childloss #grievingmom #lifeafterloss #angelinheaven #tiktoklove #thankyou
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