Holoprosencephaly (HPE) Awareness and Families for HoPE

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  • Опубликовано: 28 янв 2025

Комментарии • 16

  • @lostsheepcomehere
    @lostsheepcomehere Год назад +12

    Poor thing, may God be with her

  • @jeannieves6275
    @jeannieves6275 Год назад +4

    Wishing you all the best 🙏🏽

  • @ainsliejane1801
    @ainsliejane1801 2 дня назад

    I was born with this condition. I have a mild case. I never heard of this untill I was in my 20s. I made it to my 30s. I am very lucky i made it past 3 - 6 months. I have learning difficulties and I suffer with Seizures. I’m glad they have more Knowledge of this than back in the 90s

  • @4Mr.Crowley2
    @4Mr.Crowley2 Год назад +7

    This condition needs to be explained more clearly: the brain of a child with this condition suffers a catastrophic problem when the brain is developing in utero. Historically these babies did not survive until and through birth. The most serious issue, which you can hear loudly here, is that the child (Mariana) struggles to breathe because of the brain and skull malformations, all the time. They must use medical equipment and cpaps etc to make it through each day and night and a cold etc is life-threatening.The brain doesn’t “divide” as the mother states but that ramifications from this are massive - there is no normal brain development, she will never speak or walk (she is eight years old here), and there are many physical issues with the lack of proper bone and skull development.

    • @moniquemelendezmusic
      @moniquemelendezmusic Год назад +3

      Hey there! Mariana's mom here. While you may be right about some things, not everything you said about HPE is correct. I'm not going to go through Mariana's entire medical history, but each person is different with HPE. There are several kids, and adults, living with HPE that can walk and talk. Symptoms vary depending on the severity. I encourage you to do research on it.The kids that do live past birth are literal miracles.

    • @rachal4685
      @rachal4685 10 месяцев назад +1

      @@moniquemelendezmusic thank you for educating this person more, 14 years ago my nephew was born with alobar HPE and he only lived for 6 days.

  • @lindamarie6574
    @lindamarie6574 9 месяцев назад

    Beautiful mother and daughter!❤

  • @rosah.901
    @rosah.901 Год назад +2

    Beautiful Mariana❤

  • @dianeryan2440
    @dianeryan2440 Год назад +2

    God bless you and your family in Jesus name Amen 🙏🙏🙏🙏💗🙏🙏🙏

  • @walkingcityadventures
    @walkingcityadventures 11 месяцев назад

    God Bless You!

  • @GeorgetteSmile
    @GeorgetteSmile Год назад +3

    Please forgive my if I’m intruding. But I don’t understand why the drs would put her in some type of neck brace. To help her airway and alignment And pain

    • @moniquemelendezmusic
      @moniquemelendezmusic 11 месяцев назад +2

      Good question. I had the same question and fought for her to get one her entire life. I usually kept one of those plane pillows for her around her neck, but she threw up all over it before we went into the studio that day.

  • @Sunnysunshine208
    @Sunnysunshine208 Год назад +4

    She looks so much older than 8. Am I wrong? She is a beautiful girl. Such a great Mom.🥰🥰🥰🙏🏼

  • @Baka_Komuso
    @Baka_Komuso 8 месяцев назад +2

    Will the new prohibitions on abortion in the United States require these fetuses to be carried to term and then “go home with their parents “?