SUPERMAN ANDREW 10-9-1997-5-19-2009

Welcome to Andrew's World!! It has been provided to keep people updated about Andrew. Andrew blessed our life on October 9,1997. Andrew is 11 years old, he was diagnosed with Mucopolysacchridoes III-B, Sanfilippo Syndrome on September 17, 2002. Andrew is missing the enzyme that is essential to breakdown Heparin Sulfate. The incomplete broken-down Heparin Sulfate remains stored inside cells in his body and begin to build up causing progressive damage to his brain; stops normal development causes hyperactivity, sleep disorders, dementia, seizures, loss of speech, and life expectancy of 10-15 years.

Sanfilippo syndrome is a progressive disorder, however, the rate at which the children deteriorate varies from one individual to another. The change seen in children with Sanfilippo syndrome occurs most often very gradually, but the disorder tends to have three main stages:

In stage 1, it is noticed that the child starts to lag behind and develops difficult behavior.

In stage 2, the child may become extremely active, restless, and often have very difficult behavior. Some children have sleep disturbances. Many like to chew on their hands, clothes, or other accessible items. Language and understanding will gradually become lost. Some children never become toilet trained and those who do will eventually lose the ability.

In stage 3, the child will begin to slow down. They have more difficulty when walking or running and fall often, eventually losing the ability to walk altogether. There is no cure for Sanfilippo Syndrome. Please help find a cure for these children and helping families by donating to WILL LUTHCKE FOUNDATION

On May 18th 2006, Andrew had to get a G-tube. He would no longer take liquids by mouth to keep up with his daily intake of fluids. He has the Mic-Key button. He is doing really well with this. For the last two years we have suspected that Andrew had Hydrocephalus, which is very rare with Sanfilippo Syndrome. Hydrocephalus is the abnormal buildup of cerebrospinal fluid in the ventricles of the brain. In most instances, hydrocephalus is a lifelong condition in that the patient is treated rather than "cured." Presently, there is no known way to prevent or cure hydrocephalus and shunts are the primary method to treat hydrocephalus. On October 18th 2006 Andrew had a VP shunt placed. In July we found that Andrew also has SIADH. SIADH occurs when excessive levels of antidiuretic hormones (hormones that help the kidneys, and body, conserve the correct amount of water) are produced. The syndrome causes the body to retain water and certain levels of electrolytes in the blood to fall (such as sodium).

Journal

Monday, January 10, 2011 4:55 PM CST

“Come with me,” the angel said, “Return to the stars.” And the child leaned into the angel’s arms, her diamond blue-white wings enfolded him and covered him with stardust to warm him for the journey home.

No cracking sounds of thunder or the shrill cries of a seagull mark this passage-only the still sound of your sweet soul leaving, as silent as your voice and beating heart. Fly now through the canyons, past the sun and the moon, remembering the way you came before. Slip freely and softly through the ancient doorway into the realm of eternity.

Take with you all the love you can carry, but leave enough for me to feel your presence; for I will need that love to find my way through the darkness. For the light that was your soul has left me.

Years from now, I will find you again and together we will soar away from this place-this place that kept me separate from you. And I will leave behind my body, the pain and the tears, taking with me all the joy and spiritual wisdom I finally found amidst the vast brokenness of your death.

~~An exert from the book, “Star Child” by Jennifer J. Martin

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E-mail Author: jumpboysmom@yahoo.com

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