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. [ Ссылка ]
#laforadisease #raredisease #terminaldisease #survivorsguilt #epilepsyadvocate #childhooddementia #dementia #epilepsyfoundation #Chelseashopelaforacure #findacure #siblingsupport #researchneeded #progressivedisease
