God bless you Mariah. Your weight of spirit is palpable. You so obviously have a huge heart, and I pray God sends you and yours much healing and peace.
Currently, there are several patients worldwide using Val 1221 under compassionate use. It helps the glycogen in their muscles, but is not a cure. There is another promising treatment waiting for canine trials, then one that would need a safety study before reaching a human clinical trial. This video explains the therapeutic pathways forward: th-cam.com/video/NCsDzZpxSVQ/w-d-xo.htmlfeature=shared Thank you for your interest, too. You can also always learn more on our website: chelseashope.org/
Thank you for watching! If you are interested in supporting families with Lafora disease, you can find more information here: chelseashope.org/get-involved/
Maria tes cheuveux sont manifique quand je tai vue pleurer jai evient te prend dans mes bras jai aussi une sœur en bonne santé jai des handicap je suis sourde autiste pyschique anxiété avec paranoia
If it’s ok, I’m praying for everyone in your family. Thank you for sharing your story. ❤️
Thank you so much
Precious mama and sister
God bless you Mariah. Your weight of spirit is palpable. You so obviously have a huge heart, and I pray God sends you and yours much healing and peace.
Sending hope hugs and prayers to this beautiful family 🙏 🙏 🙏 🙏 🙏 🙏 🙏
Mariah, you are an awesome person. I pray you will be able to have peace in your life.
I really hope they found a medicine or something to help slow this disease. Would love a update ❤
Currently, there are several patients worldwide using Val 1221 under compassionate use. It helps the glycogen in their muscles, but is not a cure. There is another promising treatment waiting for canine trials, then one that would need a safety study before reaching a human clinical trial. This video explains the therapeutic pathways forward: th-cam.com/video/NCsDzZpxSVQ/w-d-xo.htmlfeature=shared Thank you for your interest, too. You can also always learn more on our website: chelseashope.org/
Thank you for sharing. I hope you are a believer in Jesus and can be assured everything in eternity will be perfection. 💕🙏🙏
Thank you for watching! If you are interested in supporting families with Lafora disease, you can find more information here: chelseashope.org/get-involved/
Essa doença é devastadora,tenho duas filhas com Lafora é uma luta todo dia.
Lamentamos ouvir isso. Estamos aqui para todos lutarmos juntos e encontrarmos uma cura!
Im praying for healing for you all in Jesus name.
🙏🙏🙏🙏🙏🙏
Is there early genetic testing for this in utero?
We are unfortunately not aware of any.
How would testing in utero change the outcome though?
@@Jasapan-u4s for in the future if they have treatment options.
Maria tes cheuveux sont manifique quand je tai vue pleurer jai evient te prend dans mes bras jai aussi une sœur en bonne santé jai des handicap je suis sourde autiste pyschique anxiété avec paranoia