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 when they think no one is watching, listening, or even signing a new sign after teaching it to them over and over and over again. Sometimes it can feel like your not winning this battle and then all of a sudden…. he signs….

My kind of RARE is loving my boys who have an unconditional love and trust.  I have faced many things through the years, but by God’s grace and mercy, He has brought me this far.

The greatest challenge in receiving great things from God is clinging onto HIM in the midst of struggles and knowing you are beating the odds with everything.

 God continues to bless and I wouldn’t make it without Him by my side.  Holding on to Jesus is all that I have in this RARE world. Love on someone who is RARE today. You will truly be blessed because I sure am!

Check out these resources and learn about Rare Diseases:

https://www.rareiscommunity.com/

globalgenes.org