Today marks the last day of Rare Disease Awareness Week!!!! We love our Emma and we are so thankful to our friends and family who rocked those stripes all week long to help spread awareness for everyone who lives with a rare disease!! We #showourstripes to help spread awareness for Emma’s rare diseases of Bosch-Boonstra-Schaaf Optic Atrophy Syndrome and Optic Nerve Hypoplasia!! With Emma’s BBSOAS she is one of less than 150 people worldwide. This mutation is what causes many of the medical issues Emma battles every day but this girl takes them all (and her 7 weekly therapies in stride)!! ⁣ ⁣ #emmaleimomi #raredisease #rarediseaseday #rarediseaseweek #boschboonstraschaafopticatrophysyndrome #bbsoas #nr2f1 #geneticmutation #opticnervehypoplasia #onh #sheisrare #rarediseasewarrior #showyourstripes #careaboutrare #wecareaboutrare https://www.instagram.com/p/B9K3Wa9lQjX/?igshid=oze9ugz0j4qo

#showourstripes #emmaleimomi #raredisease #rarediseaseday #rarediseaseweek #boschboonstraschaafopticatrophysyndrome #bbsoas #nr2f1 #geneticmutation #opticnervehypoplasia #onh #sheisrare #rarediseasewarrior #showyourstripes #careaboutrare #wecareaboutrare

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Today marks the last day of Rare Disease Awareness Week!!!! We love our Emma and we are so thankful to our friends and family who rocked those stripes all week long to help spread awareness for everyone who lives with a rare disease!! We #showourstripes to help spread awareness for Emma’s rare diseases of Bosch-Boonstra-Schaaf Optic Atrophy Syndrome and Optic Nerve Hypoplasia!! With Emma’s BBSOAS she is one of less than 150 people worldwide. This mutation is what causes many of the medical issues Emma battles every day but this girl takes them all (and her 7 weekly therapies in stride)!! ⁣ ⁣ #emmaleimomi #raredisease #rarediseaseday #rarediseaseweek #boschboonstraschaafopticatrophysyndrome #bbsoas #nr2f1 #geneticmutation #opticnervehypoplasia #onh #sheisrare #rarediseasewarrior #showyourstripes #careaboutrare #wecareaboutrare https://www.instagram.com/p/B9K3Wa9lQjX/?igshid=oze9ugz0j4qo