About Charlee Nelson

Our precious girl was a happy, fun loving, funny, sweet, smart little 3 & ½ year old girl. She enjoyed singing, dancing, playing with her brother and sister and loved anyone to read her a hundred books a day.  Little did we know the greatest trial of our lives would start on May 20, 2011, when she had her first seizure.  

Following that, she had hundreds of tests including. EEG, 2 CT scans, 3 MRI’s, Spinal tap, skin biopsy, ERG and countless blood tests to find her diagnosis.  Our little girl has had to endure so much pain and suffering, but we admire her strength!  She is one strong little lady!

After a long 21 months of testing and searching for answers...we finally have a diagnosis!  Although it is NOT the results we hoped for, we know she has a greater mission on the other side.  She has a genetic disease called Batten disease. (http://www.bdsra.org)  It occurs when a child inherits two copies of the defective gene, one from each parent.  Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills.  Eventually, children with this disease become blind and bedridden. They will be unable to walk and talk and the disease is always Fatal.  Charlee's type of NCL is Late Infantile NCL/CLN2; it begins between the ages of 2 & 4.  This form progresses rapidly and ends in death between ages 8 & 12. 

Our hearts are broken right now and I personally feel numb!  It hurts to know we are going to lose our baby!  But we know she is truly our Angel on earth!  We are so blessed to have her in our lives.  We couldn't have asked for a greater blessing!  We have a piece of Heaven in our home.  This trial has been so difficult and will continue to be, but we find so much comfort in looking at all the blessings we've received through it all.  We will enjoy every minute we get to spend with her and know we will have a special angel watching over us when He calls her home.  Please continue to pray for her and our family.  We love you all and appreciate every prayer and thought that comes our way!

All our love,
Catrina and Jeff Nelson