CHARLES RAY LEE BRANT
JANUARY 31,1998
MARCH 9, 2007
Everyone has their own way of dealing with things that come upon them in life, I myself write. So now as I am writing this, my heart breaks for my dearest friend of almost 18 years, Nikki.
Her precious angel Charlie has gone home to be with the Lord. He has suffered all his little life with SanFilippo's Syndrome.
San Filippo Syndrome is a rare and catastrophic genetic disorder. Children afflicted with this horrific disease are missing an essential enzyme that breaks down strings of a complex body sugar called heparan sulfate. The partially broken down sugar accumulates in the brain and the body's cells and tissue, causing severe damage. This disease affects children's appearances, bodily functions and development. Sanfilippo children tend to look alike and have similar health problems.
A Sanfilippo child appears normal at birth and seem to develop normally for the first year or two, but as more and more cells become damaged,symptoms begin to appear. Eventually causing hyperactivity,sleep disorders, loss of speech, mental retardation, dementia, and finally death. The life expectancy for one of these children is 10 to 15 years. Only 1 out of 24,000 children are born with this disease, and only 200 to 300 cases known in the United States.
There is currently no treatment or cure.
Charlie was the sweetest little boy, he would just melt your heart with his smile. I find it an honor to have been able to be a part of his life. The love that he had in his special little heart,is the love that we all should feel each and every day of our lives.
I envy My Sweet Nikki for being the Mother that she is. The love and affection she showed Charlie was amazing. Not a day went by in his 9 years of life that she did not show him the love that he needed. She is the type of Mother that all women should long to be like.
So friends I dedicate this blog entry to God's newest little helper Charlie, and his wonderful Mother, and my dearest friend- Nikki.
Rest in Peace Charlie!!
Love Aunt Paula
