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Liv4TheCure
United States
เข้าร่วมเมื่อ 23 พ.ค. 2019
Liv4TheCure is a nonprofit whose mission is to advance science and technology for rare chromosomal deletion syndromes. Our daughter Olivia is affected by Wolf Hirschhorn Syndrome.
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Olivia’s Story: Raising Money for Wolf Hirschhorn Syndrome (WHS) and Rare Disease Research
มุมมอง 10K5 ปีที่แล้ว
At 5 months old, our daughter Oliva was diagnosed with Wolf Hirschhorn Syndrome (WHS), a rare genetic condition where part of the fourth chromosome is deleted. This is her story. We’re telling it with hopes of spreading awareness and helping to promote positive change in the rare disease community. Funding to start research sits at $250,000. That is Liv4TheCure’s goal. For more about Olivia’s s...
My sister has this syndrome, possibly one of the oldest at 64 years old.
I hope they do an update on this family and i hope they're doing good.
Oh man the dad really breaks my heart in this sad😢
Super cutie.have you try ed any energy heal er s for part of help with her sesars ?
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.
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.
My daughter has this syndrome and it hasn’t been a easy journey especially being a single mom but she’s amazing.
You got this!!! My family and I are going through your same situation... WE GOT THIS!!
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 .
Shared on Facebook. One of my children passed away from leukemia. I feel your struggle! Keep fighting 💪
My little baby sister her name was Alyssa she made it to 13 months she died March 27th 2020 😭😭😭😭
I'm so sorry🥺💕
Sorry 😢 why she made it to 13 months ? What is her case if you don't mind to share 😢
Oliva is so very, very, very BEAUTIFUL!!
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
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
Karem Ramirez why don’t you get a miracle from Jesus
@@mankirankamaal174 why are u being rude? I don't understand why u would be.
Karem Nieto so did my sister she passed a month ago 😭😭 my little baby
Mi bb tiene la selección del cromosoma 4 del brazo largo
Deleccion