Daily Archives: June 20, 2016

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 a Chromosome and Neurological Disorder called L1 Syndrome.

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

God’s Plan

Today has been another “ok” day. Brent is so ready to get back in the swing of things with going to school and doing his routine. He loves a schedule and if it gets off track, he does not like it. He is thriving and I am so happy for him that he is still fighting his disability He is one tough teenager! I am ready to get past all the medical… Read More

Category: Disability, L1syndrome, Faith, Hardship, Special Needs, L1Syndrome

L1 Family

I never thought I would see the day of being able to meet other families that walk in my shoes daily. For so long I begged and pleaded with God to help me find someone…surely I can’t be the only one in the world?

Category: Disability, L1syndrome, L1 Families, L1 Syndrome, Parenting, Special Needs, L1Syndrome, Uncategorized Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, #thankful, awareness, better me, Chromosomes, diagnosis, disability, Encouragement, Faith, family, friendships, fun times, genetics, Hope, Hydrocephalus, Joy, Laughter, life, living, Love, love of a child, Mom, Mommy Time, PTSD, Seizures, sick, Special Needs, surviving, thriving, X-linked