Kelptyn has been admitted to Rady Children's Hospital in San Diego for the 5th time in 7.5 months. He has rebounded, from two brain surgeries just about 6 weeks ago, with a laugh or a smile. It's taken many doctors and several weeks to discover the underlying cause, Osteopetrosis. This is an extremely rare recessive genetic disease that affects 1 in 200,000-500,000 births. There are about 20 cases discovered across the U.S. each year. The only cure for the disease is a bone marrow transplant. Kelptyn's labs will be drawn tomorrow and it should take about 10 days to find out his bone marrow/blood map. Then we will move forward to find the best match for him. We are fighting for his vision, his hearing, his everything, and above all his life! Time is looking like our worst enemy right now. This disease can be very progressive in infants and even with a BMT we have about a 50/50 chance (doctor's say). Kelptyn's Grandma says "well then it looks like it will take 50% science and 50% prayer". Our Happy Star is starting his voyage into a perfect storm, but he is the son of a sailor.
5 Comments
Aunt Tinker
9/20/2011 12:52:10 pm
My favorite scripture "the favors of the Lord are not exhausted" Begin each day with these words on your lips, then let go and let God. We hold you all in our arms and prayers
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Mare Peddie
9/20/2011 12:59:07 pm
What a wonderful, thorough & hopeful explanation of K's current situation. I had no idea about anything, so I am promising to be praying for your little star as he enters the storm. Thank you for sharing your hearts. XOXO
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Stephanie I
9/20/2011 01:14:20 pm
Hi sweet friend. God Said, "Let the little children come unto me and I will care for them." We just need to relinquish them to him and have faith. We love you.
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Jenn Johnson
9/20/2011 01:14:41 pm
My every thought sweet boy! Sail home to your mommy, daddy and loving family! Be strong!!! Lets us all know where and when we can be tested. Hang in there, I havent met him, I have only read all your facebook posts, he is one lucky boy to have so much love. Thats a lot to fight for!
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Auntie Rachel
9/20/2011 02:42:51 pm
You are the son of a sailor, Kelptyn, and your mommy and daddy named you after the ocean of love in your mommy's belly. You have many Angel's guiding the way, listen to them and trust in them. We love you so so much. I believe in you big boy and you have taught me so much already.
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AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
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