Hunter's Hope - Hope through Newborn Screening

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Hunter's Hope

8 жыл бұрын

Families affected by Leukodystrophies share the hope that newborn screening offers...
www.huntershope.org

Пікірлер: 44

@SomethingAboutBeautee Жыл бұрын

I know all of us have different beliefs BUT one thing that should be mandatory is early testing even if there’s no symptoms showing because the symptoms don’t show until it’s too late for the most part. We should ALL want that kind of health security for our children. ❤

@danettehartsock6366 2 жыл бұрын

God bless you all for working so hard to help babies!

@krystalbaker-clark 2 жыл бұрын

At a time when someone might question their faith; they embraced it. You will be reunited with your child again!

@user-sr9gx9ms5q 3 жыл бұрын

I'm a Syrian mother of a Mld child and I've been through all this pain which these mothers had and now my son is 9 years old and I couldn't do anything to help him I really hope that we find any hope and science would find a solution for these poor angels ❤ my prayers for all of them

@eatymceatison97 4 жыл бұрын

My heart goes out to these parents. I hope new-born screening will be available soon.

@cynthiablandford6213 2 жыл бұрын

Always,always be grateful for your health.😔❤

@molliedevenbaugh1986 5 жыл бұрын

I just want to thank you for pushing for nb screening. My youngest son is 2 weeks old and is undergoing more testing due to finding 2 Krabbe markers. I’m so thankful we live in MO now, because I never knew this could be an issue in any of my boys due to the oldest 2 being born in MI. I’m beside myself with worry for my boys, but I’m so thankful for nb screening.

@HuntersHope 5 жыл бұрын

Hi Mollie - we would love to answer any questions you have... Please email us at hope@huntershope.org

@molliedevenbaugh1986 5 жыл бұрын

Hunter's Hope Thank you! I actually emailed you last night.

@shananalexander9789 4 жыл бұрын

Mollie Devenbaugh Mollie I just prayed for you.

@AfallinAngel 6 жыл бұрын

You are wonderful parents. So brave and caring. God knew he could trust you with these angels.

@DippyHippie 2 жыл бұрын

These parents are hero’s!

@kristy802 4 жыл бұрын

It says my state tests for ALD as of may 2019. Im in Vermont you guys are encouraging change I thank you just had a baby in December!

@aburgess9886 4 жыл бұрын

My sweet boy suffers from Krabbe disease. My heart is broken💔

@kathytaibo8080 2 жыл бұрын

😭 I'm so sorry

@tulipvalley111 4 жыл бұрын

Shared!! Save these sweet babies

@np100 2 жыл бұрын

Can parents be tested before they get pregnant?

@melissashanfield1028 2 жыл бұрын

Also those planning to have a kid can get genetics testing to see if you are a carrier for anything.

@elliesouza717 3 ай бұрын

And doesn't mean your child will have difficulties

@user-rw8ow3yf6l Жыл бұрын

❤❤

@teresahardin5241 4 жыл бұрын

Didn't like that the sick baby boy had to hear he's dying. God please help these families.

@catherinespark 3 жыл бұрын

Yes, I had queries about this too. Most of the time Krabbe affects the body but not the mind, though dementia can occur. I am certain that his mother had thought of this though. It may be that he has received help in making peace with this already - these children have to learn a lot in a short time at a young age. He may have been talked to about heaven and getting healed there, which is how a lot of children find peace with illnesses like these. In which case, hearing that would not have been news to him. His mother knows him better than anybody else, and is the best person to know what is and isn't appropriate to say in front of him at the time of filming.

@shananalexander9789 4 жыл бұрын

What do we do to get this done? Who do we talk to and who do we beg to make this a normal routine of testing for this disease?

@annisjohnson844 2 жыл бұрын

can thèse tests Bérard used To diagnose Tay Sachs disease in time to treat it?

@myahbattley1291 Жыл бұрын

2015

@jeannieves6275 10 ай бұрын

🙏🏽

@marymosqueda5224 4 жыл бұрын

Is Krabbe only affecting male children?

@HuntersHope 4 жыл бұрын

Krabbe affects both male and female children...

@briannec2016 4 жыл бұрын

My mother and Dad had a little girl, Holly, who had it. She died October '78, they were five months pregnant with me, I was born March '79. They almost didn't have me because they didn't want to watch another baby die.

@shananalexander9789 4 жыл бұрын

I just watched Tori’s story. Both genders can get this.

@franny5295 2 жыл бұрын

Dang, that's sad...

@ramosjanish738 Жыл бұрын

😭

@myahbattley1291 Жыл бұрын

😂😂😂😂😂😂😂😂😂😂😂😂😂❤❤😂😂😂😢😢😢😢😢😢😢😢😢

@TrinketStarz 2 жыл бұрын

Can Lorenzo's oil help? Did you know about Lorenzo's oil at the time? Grand misdiagnosis is a time waster. My son suffered for years before they finally pinned it down.

@astrinymris9953 2 жыл бұрын

My understanding is that Lorenzo's Oil only helps half of the children who are started on it before symptoms manifest, meaning that you still need newborn screening. The bone marrow transplant seems like a more effective treatment. Either way, newborn screening is the key.

@caporfact6205 2 жыл бұрын

I know a another KZfaq er that that looks like your son that you just showed us on video it's called Sunshine baby

@stepht7508 2 жыл бұрын

I didn't realize that if diagnosed early enough there was treatment available for these children.My God,why aren't all newborns tested?This makes no sense 🤬

@HuntersHope 2 жыл бұрын

We agree! We will fight until every child is screened for Krabbe at birth... You can learn more on the NBS section of our website.

@myahbattley1291 Жыл бұрын

Aswe Jamal Adams county Ohio health and we can go out and Alaska t

@aprilrobinson3379 2 жыл бұрын

@Jac-o-lina3924 Жыл бұрын

Is this disease a result of vaccine injury? No disrespect intended. We just watched a documentary which addressed vaccine injuries becoming more prevalent beginning in 1989, predominantly in boys.

@HuntersHope Жыл бұрын

Hi Jacqueline! It is not. You can learn more about leukodystrophy on our website here: www.huntershope.org/family-care/leukodystrophies/ Thank you!

@jrpacer6355 10 ай бұрын

Its genetic disorder

@elliesouza717 3 ай бұрын

That's ridiculous