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My Kind Of RARE

Loving someone who is RARE is a precious honor. I am thankful God has given me the privilege to love two special RARE people in this life. This RARE condition is a chromosome disorder of the L1cam gene and it’s a neurological disorder called L1 Syndrome. Daily struggles make it worthwhile when the smallest little grin comes across my sweet boys faces or hearing the laughter and seeing the silly faces they make… Read More

Category: Acceptance, Faith, Parenting, Siblings, Same Diagnosis, Special Needs, L1Syndrome, Thankfulness, Uncategorized Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, #thankful, awareness, better me, Chromosomes, family, Heaven, Hope, Hydrocephalus, Joy, Laughter, life, Love, love of a child, Special Needs, surviving, thriving, X-linked

L1CAM 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: Uncategorized Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, #thankful, Chromosomes, disability, Faith, family, friendships, fun times, genetics, Hope, life, Love, love of a child, Mom, Special Needs, X-linked

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. Other symptoms can occur in the pure subtypes including bladder dysfunction or abnormal sensations in the lower legs or feet. HSP is classified as “complex” or “complicated” if additional symptoms are present such as an inability to coordinate voluntary movements (ataxia),… Read More

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

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 such distress when I couldn’t do anything about it. He would be unconscious for days.

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

Being Accepted

It has been 20 years since I have been out of school and nothing has changed about Special Needs… I will probably make some people upset but ya know, it does hurt to know that special needs children are left out of everything. The only thing they get to look forward to is Special Olympics that happens once a year. There should be more structure and involvement within the school system and… Read More

Category: Acceptance Tags: #globalgenes, #hydrocephalusawareness, #l1cam, #l1strong, anxiety, awareness, better me, Chromosomes, death, depression, diagnosis, disability, Encouragement, Faith, family, friendships, genetics, Grieving, Hardship, Hope, Hydrocephalus, Joy, life, living, Love, love of a child, Mom, Special Needs, surviving, thriving, X-linked