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
3 comments:
Paula- that was precious. He looks so much like my little friend that passed away. I'll bet he's dancing away at the feet of Jesus today! You and Nikki will be in my prayers as you heal. Nikki is going to need a strong friend like you. After you have someone depend on you for their every need day in and day out and then they are gone, you really don't know how to live without that, so you'll need to help her find her way.
This verse comes to mind:
Isaiah 43:18-19 Do not remember the former things, nor consider the things of old. Behold I will do a new thing. Now shall it spring forth. Shall you not know it? I will even make a road in the wilderness and rivers in the desert.
Help her see her "new thing"
as i look at his pictures and remember how he was the last time they were at my home,i also remember the message that GOD gave sister stacy sitting at the piano at church that Sunday after Charlie passed--He is running and laughing and playing at the feet of Jesus today and forever more.. And for that im thankful--Because i KNOW Charlie is now sheltered in the Arms of GOD !!!
Paula I am very proud of you for standing beside Nikki. She needs her friends and family now and even more in the days to come. Nikki has truly grown into a wonderful Mother. Tell her that we love her and they are all in our prayers.
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