share your story — Stories to Inspire

Posts in share your story

Cal Matthew

Meet Cal and learn about life a with Down syndrome

Down syndrome | #nothingdownaboutit | #upsyndrome | the lucky few | Down syndrome awareness | trisomy 21 | #morealikethandifferent | disability advocate | special needs | special needs family | special needs parenting | inclusion | inclusion matters

share your storyMacy GilsonMarch 24, 2022down syndrome, nothing down about it, the lucky few, down syndrome awareness, ex, upgraded to 47, welc, disability advocateComment

Hailey

Meet Hailey and learn about life with Sturge Weber Syndrome.

Sturge Weber Syndrome | port wine stain | vascular malformation | glaucoma | seizures | epilepsy | infantile epilepsy | inclusion | inclusion matters | disability education | disability advocate

share your storyMacy GilsonJanuary 12, 2022Sturge Weber Syndrome, port wine stain, vascular malformation, glaucoma, seizures, epilepsy, infantile epilepsyComment

Colbie

Meet Colbie and learn about life with KIF1A, a rare neurodegenerative disease.

KAND | KIF1A | neuropathy | spasticity | seizures | developmental delay | optic nerve atrophy | hypotonia | ataxia | cerebellar atrophy | Associated Neurological Disorders | neurodegenerative disease | rare diseases | chronic disease | genetic mutation | inclusion | inclusion matters | disability education | disability advocate

Emma and Abby

Learn more about Emma and Abby, two sisters with a rare genetic disorder called THAP12!

infantile spasms | genetic mutation | disability advocate | special needs | special needs family | special needs parenting | inclusion | inclusion matters | infant epilepsy | epilepsy | disability education | disability advocate

share your storyMacy GilsonJune 1, 2021genetic mutation, THAP12, rare disease, rare genetic syndrome, rare deletion, rare chromosomal deletion, infantile epilepsy, epilepsy, epilepsy warrior, infantile spasms, genetic disease, lightning and love, seizure disorder, seizure, stem cell research, brain MRIComment

Nora

Learn more about Nora, an amazing warrior with achondroplasia!

dwarfism | genetic mutation | disability advocate | special needs | special needs family | special needs parenting | inclusion | inclusion matters | achondroplasia | skeletal dysplasia | disability education | disability advocate

share your storyMacy GilsonMay 21, 2021dwarfism, little person, little people, achondroplasia, skeletal dysplasia, dysplasia, genetic mutationComment

Frankie

Learn more about Frankie, an amazing warrior with cerebral palsy!

cerebral palsy | #CPawarenessmonth | #CPawareness | #morealikethandifferent | disability advocate | special needs parenting | inclusion | inclusion matters | esotropia | NICU | NICU warrior | hip dysplasia | strabismus

share your storyMacy GilsonMay 13, 2021cerebral palsy, cp, cp awareness month, Spastic Diplegic Cerebral Palsy, NICU, NICU fighter, NICU baby, intellectual disability, cerebral palsy awareness day, esotropia, strabismus, hip dysplasiaComment

Lawson

Learn more about Lawson, an amazing warrior with cerebral palsy!

cerebral palsy | #CPawarenessmonth | #CPawareness | #morealikethandifferent | disability advocate | special needs | special needs family | special needs parenting | inclusion | inclusion matters | hypoxic ischemic encephalopathy | NICU | NICU warrior | brain injury | anoxia | global developmental delay | developmental delay | childhood sleep disorder | childhood epilepsy | epilepsy

share your storyMacy GilsonMarch 25, 2021cerebral palsy, cp, cp awareness month, Spastic Diplegic Cerebral Palsy, hypoxic ischemic encephalopathy, epilepsy warrior, epilepsy, childhood sleep disorder, sleep disorder, NICU, NICU fighter, NICU baby, intellectual disability, visual impairment, cerebral palsy awareness dayComment

Tate

Learn more about Tate, an amazing warrior with Down syndrome!

Down syndrome | #nothingdownaboutit | #upsyndrome | the lucky few | Down syndrome awareness | trisomy 21 | #morealikethandifferent | disability advocate | special needs | special needs family | special needs parenting | inclusion | inclusion matters

share your storyMacy GilsonMarch 16, 2021down syndrome, nothing down about it, up syndrome, trisomy21, extra chromosome = extra awesome, t21, the lucky few, childhood cancer, pediatric cancer, childhood cancer diagnosis Comments

Ashton

Learn more about Ashton, an amazing warrior with Septo Optic Dysplasia!

blindness | school for the blind | Braille | sept-optic dysplasia | optic nerve | optic nerve hypoplasia | disability advocate | special needs | special needs family | special needs parenting | inclusion | inclusion matters

share your storyMacy GilsonDecember 18, 2020NICU, NICU baby, optic nerve hypoplasia, blind, blindness, school of the blind, TVI, teach of the visually impaired, braille, Septo Optic DysplasiaComment

Genevieve

Learn more about Genevieve, an amazing warrior with Down syndrome!

Down syndrome | #nothingdownaboutit | #upsyndrome | the lucky few | Down syndrome awareness | trisomy 21 | #morealikethandifferent | disability advocate | special needs | special needs family | special needs parenting | inclusion | inclusion matters

share your storyMacy GilsonDecember 8, 2020down syndrome, nothing down about it, up syndrome, trisomy21, extra chromosome = extra awesome, t21, the lucky few, childhood cancer, pediatric cancer, childhood cancer diagnosis Comments