Survivor's Guilt | Merriam Family Story | Living with Lafora Disease

Sibling Mariah Merriam talks about her challenges of being the only sibling without Lafora Disease and the survivor’s guilt she feels watching her sister Anissa and brother Ty slowly die, whilst she lives her life as a normal young adult. She discusses the signs she noticed in her sister as the years went on until they received the diagnosis and her life’s mission to study in a Lafora lab on research to find a cure for her siblings. Mother Jenifer Merriam also talks about how the devastating rare disease has affected her family.
The launch of this video was on October 1st, 2022 for Lafora Body Disease Day.
© 2022 Copyright, Chelsea's Hope Lafora Children Research Fund
The mission of Chelsea’s Hope is to raise funds for research, treatment, and ultimately, a cure for those affected by Lafora Disease.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 non-profit organization. chelseashope.org/
#laforadisease #raredisease #terminaldisease #survivorsguilt #epilepsyadvocate #childhooddementia #dementia #epilepsyfoundation #Chelseashopelaforacure #findacure #siblingsupport #researchneeded #progressivedisease

[@flxmkr]

If it’s ok, I’m praying for everyone in your family. Thank you for sharing your story. ❤️

[@chelseashopelaforacure]

Thank you so much

[@Jasapan-u4s]

Precious mama and sister

[@eileenmacdougall8945]

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.

[@francinegreenway8451]

Sending hope hugs and prayers to this beautiful family 🙏 🙏 🙏 🙏 🙏 🙏 🙏

[@nancyhaynes4459]

Mariah, you are an awesome person. I pray you will be able to have peace in your life.

[@djsews]

Thank you for sharing. I hope you are a believer in Jesus and can be assured everything in eternity will be perfection. 💕🙏🙏

[@chelseashopelaforacure]

Thank you for watching! If you are interested in supporting families with Lafora disease, you can find more information here: chelseashope.org/get-involved/

[@aris5703]

I really hope they found a medicine or something to help slow this disease. Would love a update ❤

[@chelseashopelaforacure]

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: kzbin.info/www/bejne/hHTWda2Qpd2GjLMfeature=shared Thank you for your interest, too. You can also always learn more on our website: chelseashope.org/

[@luicimarbiccaoliveira2145]

Essa doença é devastadora,tenho duas filhas com Lafora é uma luta todo dia.

[@chelseashopelaforacure]

Lamentamos ouvir isso. Estamos aqui para todos lutarmos juntos e encontrarmos uma cura!

[@roselynn816]

Im praying for healing for you all in Jesus name.

[@dorothywright2743]

🙏🙏🙏🙏🙏🙏

[@CC-hz1qm]

Is there early genetic testing for this in utero?

[@chelseashopelaforacure]

We are unfortunately not aware of any.

[@Jasapan-u4s]

How would testing in utero change the outcome though?

[@xirisx1988]

​@@Jasapan-u4s for in the future if they have treatment options.

[@caroleperret499]

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