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@proffesional_idiot_381: #fyppp#HwangHyunjin@jypstraykids

@Professional_Idiot_381
@Professional_Idiot_381
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Tuesday 15 September 2026 02:29:47 GMT
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Stay for a minute while we raise awareness for rare genetic disorders and share Halo’s story. Halo is my beautiful little girl, born with CTBP1-related disorder, an extremely rare neurogenetic condition that has left her with global developmental delays, hypotonia, dysphagia, and complex respiratory needs. We’ve spent weeks in the PICU fighting through pneumonia, aspiration, respiratory failure, and moments I never thought a mother should have to witness. But today is a new day. Today we’re working on 3 liters of low-flow nasal cannula for 3 hours at a time, then alternating back to BiPAP to help her slowly acclimate and build up her tolerance. It may sound like a small step, but to us, it’s HUGE. I’m also getting CPR certified, because if we’re able to bring Halo home, I need to be prepared for every possibility — even the possibility that she could code again at home. As terrifying as that thought is, I want to have the knowledge and skills to give my baby the best chance possible. We’re not at the finish line yet. But for the first time in a while, it feels like we’re running toward it. Please keep sharing Halo’s story. Rare diseases deserve awareness, research, funding, and answers. There are so many families fighting battles that the world has never heard of. And because you guys keep telling me to tag @Mark Cuban in Halo’s posts… I’m finally going to listen. I’ll tag him here and see just how far we can take this — raising awareness for CTBP1, getting Halo the resources she needs, and hopefully reaching people who can help make a real difference. Heck, I’ll even add @Ms Rachel. You never know how far this corner of the internet can take us. 🤍 #fyp #fypシ #viral #support #foryoupagе
Stay for a minute while we raise awareness for rare genetic disorders and share Halo’s story. Halo is my beautiful little girl, born with CTBP1-related disorder, an extremely rare neurogenetic condition that has left her with global developmental delays, hypotonia, dysphagia, and complex respiratory needs. We’ve spent weeks in the PICU fighting through pneumonia, aspiration, respiratory failure, and moments I never thought a mother should have to witness. But today is a new day. Today we’re working on 3 liters of low-flow nasal cannula for 3 hours at a time, then alternating back to BiPAP to help her slowly acclimate and build up her tolerance. It may sound like a small step, but to us, it’s HUGE. I’m also getting CPR certified, because if we’re able to bring Halo home, I need to be prepared for every possibility — even the possibility that she could code again at home. As terrifying as that thought is, I want to have the knowledge and skills to give my baby the best chance possible. We’re not at the finish line yet. But for the first time in a while, it feels like we’re running toward it. Please keep sharing Halo’s story. Rare diseases deserve awareness, research, funding, and answers. There are so many families fighting battles that the world has never heard of. And because you guys keep telling me to tag @Mark Cuban in Halo’s posts… I’m finally going to listen. I’ll tag him here and see just how far we can take this — raising awareness for CTBP1, getting Halo the resources she needs, and hopefully reaching people who can help make a real difference. Heck, I’ll even add @Ms Rachel. You never know how far this corner of the internet can take us. 🤍 #fyp #fypシ #viral #support #foryoupagе






program banyak yang keracunan kenapa masih di jalanin ya?🙂 #bapakpalingjujur #punyabapakjujur #bpjclip #fyppppppppppppppppppppppp #viral
program banyak yang keracunan kenapa masih di jalanin ya?🙂 #bapakpalingjujur #punyabapakjujur #bpjclip #fyppppppppppppppppppppppp #viral
mc.ArtyGrief.net #funtime #reallyworld #майнкрафт #Minecraft
mc.ArtyGrief.net #funtime #reallyworld #майнкрафт #Minecraft

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