Levis Legacy
This is baby Levi. He is so happy and full of love. He melts hearts and brings joy everywhere he goes. He loves life and everyone in it. He is always smiling and hardly ever cries, and is just full of light and happiness. Levi is very rare because you dont see many babies as calm and collected and just so full of love and down to earth as he is, but also because he has a very rare metabolic disease. On January 28, 2016, Levis doctor called. It was the news we had been dreading for three long weeks. They had a diagnosis. Levi has Sandhoff Disease. Sandhoff disease is found in about one out of every 200,000 people. Sandhoff disease comes in three different types. Infantile, juvenile, and adult. Levi has infantile onset GM2 Gangliosidosis, also known as Sandhoff Disease. Sandhoff disease is a rare inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.The most common and severe form of Sandhoff disease becomes apparent in infancy. Infants with this disorder typically appear normal until the age of 3 to 6 months, when their development slows and muscles used for movement weaken. Affected infants lose motor skills such as turning over, sitting, and crawling. They also develop an exaggerated startle reaction to loud noises. As the disease progresses, children with Sandhoff disease experience seizures, vision and hearing loss, intellectual disability, and paralysis. Some affected children also have enlarged organs or bone abnormalities. Children with the severe infantile form of Sandhoff disease usually live only into early childhood. The life expectancy for Levi is 2-4 years. There is no cure and no treatments to get rid of the disease, however there are some medications to help slow down the progression of the disease. One medication is called Miglustat, also known as Zavesca. It will help to sustain and slow down the disease progression. Levi is expected to start the medication at the end of October. He just received most of his special equipment to help him sit. The disease is expected to completely take away everything that we take for granted on a daily basis. His vision, hearing, motor skills, and movement. He has already lost 90% of his vision and has regressed alot since May. Levi is the happiest and most loving baby. We would give anything to spend as much time as possible with him. He will forever be our miracle and this is his Legacy! Feel free to share our special boy with the world!
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