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. ❤
@danettehartsock63662 жыл бұрын
God bless you all for working so hard to help babies!
@krystalbaker-clark2 жыл бұрын
At a time when someone might question their faith; they embraced it. You will be reunited with your child again!
@user-sr9gx9ms5q3 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
@eatymceatison974 жыл бұрын
My heart goes out to these parents. I hope new-born screening will be available soon.
@cynthiablandford62132 жыл бұрын
Always,always be grateful for your health.😔❤
@molliedevenbaugh19865 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.
@HuntersHope5 жыл бұрын
Hi Mollie - we would love to answer any questions you have... Please email us at hope@huntershope.org
@molliedevenbaugh19865 жыл бұрын
Hunter's Hope Thank you! I actually emailed you last night.
@shananalexander97894 жыл бұрын
Mollie Devenbaugh Mollie I just prayed for you.
@AfallinAngel6 жыл бұрын
You are wonderful parents. So brave and caring. God knew he could trust you with these angels.
@DippyHippie2 жыл бұрын
These parents are hero’s!
@kristy8024 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!
@aburgess98864 жыл бұрын
My sweet boy suffers from Krabbe disease. My heart is broken💔
@kathytaibo80802 жыл бұрын
😭 I'm so sorry
@tulipvalley1114 жыл бұрын
Shared!! Save these sweet babies
@np1002 жыл бұрын
Can parents be tested before they get pregnant?
@melissashanfield10282 жыл бұрын
Also those planning to have a kid can get genetics testing to see if you are a carrier for anything.
@elliesouza7173 ай бұрын
And doesn't mean your child will have difficulties
@user-rw8ow3yf6l Жыл бұрын
❤❤
@teresahardin52414 жыл бұрын
Didn't like that the sick baby boy had to hear he's dying. God please help these families.
@catherinespark3 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.
@shananalexander97894 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?
@annisjohnson8442 жыл бұрын
can thèse tests Bérard used To diagnose Tay Sachs disease in time to treat it?
@myahbattley1291 Жыл бұрын
2015
@jeannieves627510 ай бұрын
🙏🏽
@marymosqueda52244 жыл бұрын
Is Krabbe only affecting male children?
@HuntersHope4 жыл бұрын
Krabbe affects both male and female children...
@briannec20164 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.
@shananalexander97894 жыл бұрын
I just watched Tori’s story. Both genders can get this.
@franny52952 жыл бұрын
Dang, that's sad...
@ramosjanish738 Жыл бұрын
😭
@myahbattley1291 Жыл бұрын
😂😂😂😂😂😂😂😂😂😂😂😂😂❤❤😂😂😂😢😢😢😢😢😢😢😢😢
@TrinketStarz2 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.
@astrinymris99532 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.
@caporfact62052 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
@stepht75082 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 🤬
@HuntersHope2 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
@aprilrobinson33792 жыл бұрын
Hi
@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!