Disability, L1syndrome | SURVIVING TWO THRIVING...with L1cam Syndrome

Aphasia

a·pha·sia is the loss of ability to understand or express speech, caused by brain damage. Aphasia gets in the way of a person’s ability to use or understand words. Aphasia does...

Category: Disability, L1syndrome Tags: #l1cam, #l1strong, aphasia, awareness, disability, Encouragement, Faith, Hardship, Hope, life, Love, love of a child, Special Needs, speech, surviving, talking, thriving, understanding

Spastic Paraplegic (SPG1)/Shuffling Gait

Hereditary spastic paraplegia is a general term for an expanding group of rare genetic disorders characterized by slowly progressive weakness (paraplegia) and increased muscle tone and stiffness (spasticity) of leg muscles....

Category: Disability, L1syndrome Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, awareness, Chromosomes, diagnosis, disability, Encouragement, Faith, family, genetics, Grieving, Hardship, Hope, Hydrocephalus, Love, love of a child, paraplegic, SPASTIC, Special Needs, surviving, thriving, wheelchair bound

X-linked Hydrocephlaus

X-linked hydrocephalus (L1 syndrome) **September is Hydrocephalus Awareness month** The Hydrocephalus Association describes X-Linked Hydrocephalus and Finding our way with L1cam! Check it out!! Hydrocephalus comes from the Greek words hydro meaning water...

Category: Disability, L1syndrome, Special Needs, L1Syndrome Tags: #hydrocephalusawareness, #l1cam, #l1strong, anxiety, awareness, Chromosomes, diagnosis, disability, Encouragement, Faith, genetics, Hope, Hydrocephalus, life, living, Love, love of a child, Seizures, Special Needs, stress, surviving, thriving, X-linked

When you wake…..

I will probably never understand Seizures. Every time Brandon had one, It would throw him back into learning what he had just learned. It broke my heart to see him in...

Category: Disability, L1syndrome, Hospitalization, Seizures Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, anxiety, awareness, Chromosomes, death, depression, diagnosis, disability, Encouragement, Epilepsy, Faith, genetics, Grieving, Hardship, Heaven, Hope, Hydrocephalus, life, Love, love of a child, Mom, PTSD, Seizures, Special Needs, stress, surviving, thriving, X-linked

My Kind of RARE

Loving someone who is RARE is a precious honor. I am thankful God has given me the privilege to love 2 special RARE people in this life. This RARE condition is...

Category: Disability, L1syndrome, Siblings, Same Diagnosis, Special Needs, L1Syndrome