Olivia’s Story: Raising Money for Wolf Hirschhorn Syndrome (WHS) and Rare Disease Research

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  • เผยแพร่เมื่อ 20 พ.ย. 2024

ความคิดเห็น • 21

  • @ltetobago
    @ltetobago 5 ปีที่แล้ว +7

    My daughter has a micro deletion and is 20 yrs old..she loves music and food..she started walking at 2.5 yrs, stopped talking at 6yrs and stopped having seizures at about 8 yrs old...thnks for sharing ❤ I'll visit the sites

  • @karemramirez177
    @karemramirez177 5 ปีที่แล้ว +13

    Hi my daughter is 8 months she also has WHS she saw this video with me and smiled when she saw Olivia god bless her

    • @mankirankamaal174
      @mankirankamaal174 5 ปีที่แล้ว +1

      Karem Ramirez why don’t you get a miracle from Jesus

    • @martinemikita9281
      @martinemikita9281 4 ปีที่แล้ว +3

      @@mankirankamaal174 why are u being rude? I don't understand why u would be.

    • @juliapercy9827
      @juliapercy9827 4 ปีที่แล้ว

      Karem Nieto so did my sister she passed a month ago 😭😭 my little baby

    • @perezdiazkatiaevelin1192
      @perezdiazkatiaevelin1192 ปีที่แล้ว

      Mi bb tiene la selección del cromosoma 4 del brazo largo

    • @perezdiazkatiaevelin1192
      @perezdiazkatiaevelin1192 ปีที่แล้ว

      Deleccion

  • @melissaforbes3896
    @melissaforbes3896 4 ปีที่แล้ว +9

    My daughter has this syndrome and it hasn’t been a easy journey especially being a single mom but she’s amazing.

    • @karenyazminortega7551
      @karenyazminortega7551 3 ปีที่แล้ว +3

      You got this!!! My family and I are going through your same situation... WE GOT THIS!!

  • @unicornmadness6286
    @unicornmadness6286 10 หลายเดือนก่อน +1

    I hope they do an update on this family and i hope they're doing good.

  • @hollyhinkel2418
    @hollyhinkel2418 4 ปีที่แล้ว +3

    Shared on Facebook. One of my children passed away from leukemia. I feel your struggle! Keep fighting 💪

  • @martinemikita9281
    @martinemikita9281 4 ปีที่แล้ว +3

    Oliva is so very, very, very BEAUTIFUL!!

  • @ChocolateEClaire16_
    @ChocolateEClaire16_ ปีที่แล้ว

    Oh man the dad really breaks my heart in this sad😢

  • @daydayblanco8097
    @daydayblanco8097 4 ปีที่แล้ว +2

    My neice has whs and she was born with it since her major seizure she hasn't been able to eat or drink so she has scheduled feed times and she Is on a feeding tube she has a mickey button but she runs and walks she makes noises and laughs but she hasn't ever spoken a word I didn't know what whs was till my older sister had my niece my neice is 3 yrs old. My neice also has so much energy ppl expect she won't be so energetic she still a kid she jus has other issues she has to face in life but she is so energetic and makes the funniest facial expressions even tho she Kant speak u know wen she doesn't like sum or wen sum makes her happy she gonna let u know .

  • @shaquanafleming4081
    @shaquanafleming4081 3 ปีที่แล้ว

    My daughter who is 3 years old has WHS and CHD8 Overgrowth Syndrome, so I know exactly how you feel. My daughter used to be on a walker but now she walks on her own. She repeats everything she hears. Then 5 months ago I found out that she is on the spectrum with autism. So yes I know what you are going through. Enjoy your daughter while you can she seems like pure joy to be around. I hope she continues to get better. God bless you all.

    • @Spiritwave22
      @Spiritwave22 2 ปีที่แล้ว

      My son has wolfhirschorn syndrome as well and his two years old , not sitting, talking also can't control his head yet but we love him can't imagine life without him.

  • @aileenjackson1706
    @aileenjackson1706 4 วันที่ผ่านมา

    My sister has this syndrome, possibly one of the oldest at 64 years old.

  • @myroztoprozanski5824
    @myroztoprozanski5824 2 ปีที่แล้ว

    Super cutie.have you try ed any energy heal er s for part of help with her sesars ?

  • @juliapercy9827
    @juliapercy9827 4 ปีที่แล้ว +2

    My little baby sister her name was Alyssa she made it to 13 months she died March 27th 2020 😭😭😭😭