@mackenzies_eb_journey: We are heading to one of the top EB centers in the country to establish care for Mackenzie! We’re hoping to get answers about how best to care for our sweet baby girl, figure out the best ways to wrap and address her wounds, when and if to get her a g-tube. We want to know what to expect in the next year or two. We know they may not be able to answer all of our questions, but we’re hoping that this will be a helpful trip! And nothing like a good road trip to allow a lot of time to reconnect with my husband 💗 #epidermolysisbullosa #epidermolysisbullosaawareness #butterflybaby #specialneedsmom #fyp #specialneedsparenting #medicallycomplex #raredisease #babytok #roadtrip #indy #parenting #momlife #letsgo
Mackenzie’s EB Journey 🦋
Region: US
Monday 30 June 2025 20:04:11 GMT
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𝕊𝕒𝕣𝕚 𝕋𝕖𝕣𝕒𝕟 ℕ𝕒𝕧𝕒𝕤 :
"Sorry for the question, but with all due respect — until what age did the doctors say she might live?"
2025-06-30 21:19:58
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creacionesligdijhon :
Dios te bendiga hermosa princesa
2025-07-01 03:27:57
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Merly Teran :
God bless you beautiful princess... how beautiful to see you happy
2025-07-01 02:04:01
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Ana iiGii90 :
coucou princesse ;*
2025-06-30 20:07:36
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Mom :
I have 2 nephews and 2 nieces with EB there is so much to know and do but the best thing you can do is love them
2025-07-01 04:38:50
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Cinderella :
my best friend had it. I got a butterfly tattoo for him. I knew him when I was in 1st grade him 2nd. 22 now. its amazing how time flys by
2025-07-02 02:16:25
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lastnamefirstname :
she's beautiful 🥰🥰🥰
2025-07-01 00:10:18
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thriftymomma450 :
she is beautiful 😍
2025-07-01 00:20:59
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Chronically Ria :
I hope you get some answers! ❤️
2025-07-01 02:50:11
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✝️🌺🌸🌻Desiree🌻🌸🌺✝️ :
Big prayers ❤️
2025-07-01 02:40:45
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Joanie forcier🦋 :
Mackenzie look really happy, it’s good to see 💜 I hope you will found some answer to you question.
2025-07-01 01:20:06
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bonzaitzu :
Your family is gorgeous, sending many blessings and prayers for Mackenzie 🙏🙏🙏 she is so loved 🙏🙏🙏🦋🦋🦋
2025-08-09 13:40:27
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rgarcia🧿🕉 :
Praying for you all and they give you all the answers you need. 🙏🙏🙏
2025-06-30 23:28:45
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🍩𝒹𝒶𝓁𝒾𝓈 :
I hope you get all the answers you are looking for mama, beautiful Mackenzie girl is really moving more these days ☺️god bless you always !
2025-06-30 20:11:57
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vtwinaddicted :
she is so beautiful, and your the best mom😁❤
2025-07-01 00:15:43
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kimberly_alike :
God bless you guys. Hope they’re ok can give you some answers.
2025-06-30 23:57:32
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Brooke 🇨🇦 :
Following from Ontario Canada ❤️I'm a NICU nurse x have seen this twice so im Following to gain knowledge x because you guys are amazing!
2025-07-01 01:45:33
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𝕊𝕒𝕣𝕚 𝕋𝕖𝕣𝕒𝕟 ℕ𝕒𝕧𝕒𝕤 :
How months is she?
2025-06-30 21:18:19
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Mariia Cee :
Hi sweet Mackenzie!!❤️❤️look at her doing tummy time!!! 🥺❤️hope you get all the answers mama!
2025-06-30 21:36:20
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puri :
hay que bella la 🍼🍼🍼 dios la bendiga 🙏🏼🙏🏼🙏🏼🙏🏼😍😍
2025-06-30 20:14:26
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Calli :
What would happen if she got a sunburn or if she had a cut?
2025-06-30 22:57:45
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kyle56703 :
Bless this family 🙏 🦋
2025-06-30 21:53:51
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Denise O'Boyle :
So sweet 💕 hoping you get some answers
2025-07-01 14:08:59
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𝕊𝕒𝕣𝕚 𝕋𝕖𝕣𝕒𝕟 ℕ𝕒𝕧𝕒𝕤 :
When it's her Birthday?
2025-06-30 21:18:28
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RalucaLDN :
God bless you!❤️
2025-06-30 20:10:08
0
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