Tag: #globalgenes

My Kind Of RARE

 Loving2016-02-09 17.05.06 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. The ins and outs of daily struggles makes it worthwhile when the smallest little grin comes across their face or hearing the laughter and seeing the silly faces they make when they think no one is watching or listening or even signing a new sign after teaching it to them over and over and over again and you feel like your not winning this battle and all of a sudden…. he signs….

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?

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), seizures, intellectual disability, skin disease, dementia, and hearing and vision abnormalities. Individual forms of HSP are caused by a mutation to a specific gene. 

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.

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 with the typical children as well. Their should be churches willing to go the extra mile to help a person that has special needs regardless of the disability if in a wheelchair or not.  Everyone is always talking about how great their school and church is but no one is helping the ones that need it most.  Where is the love in that??  God knows my heart and knows how this hurts me and other parents when their children feel alone. I am not saying that my child feels alone. My child is non-verbal.  I am making a point that if you are gonna brag about how well your school system is, then mention the Special Needs classes as well and give funds to help that department as well. Include these kids as much as you do the typical!  I understand that life is not fair. I am just tired of these children being left out.  In my opinion it’s just not right!  


My prayer is that people will be willing to open their eyes and see that children with special needs are just as important as typical children. I have learned through the years having both of my boys that patience is a must! If people would just slow down and listen and pray and give their all for: 1) to God. 2) their family. 3) church. 4) ALL Education including Special Education, I believe you would see more parents bringing their children to church and being involved but it will not happen unless we as a whole reach out and let parents know that they are welcomed and included within the schools and church.


This is how my heart feels today.

I pray God will soften the hearts of the ones that see no need in these situations and that He would give them a heart and desire to include these precious children, parents, and adults and not leave them out just because they have a disability. I pray also that God would allow me to continue being an advocate and never allow me to give up and to stand in what I believe in and through Him and for Him alone to receive the Glory for it all. God, You gave me children that face a constant battle everyday with no cure and I am thankful everyday for that because You keep me grounded in Your Word.  One is now completely healed.  One is continuing to struggle with life and God, it’s not easy.  You never said it was going to be but, You are there to walk with me through times like these and I again am so thankful because I can’t do this alone. I pray for the parents that struggle daily with the needs of their children and the adults that need help physically and are not accepted.  God, cover us with Your loving arms and help us to feel you as you surround us in our daily task.  It’s in Jesus Name that I pray, Amen!

%d bloggers like this: