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 Zevesca, which Levi is expected to start very soon we hope. It will help to sustain and slow down the progression of the disease. The other medication that can help to preserve any enzymes Levi has left is called Pyrimethamine and is very costly and difficult to get insurance approval to pay for it. Levi's mom had to quit her job to care for him. He alsonhas two sisters and one brother. There is no local healthcare in Wyoming that knows how to treat or manage a child with Levi's condition, so monthly trips to Denver, Colorado is a given. Money is very tight trying to care for a child with so many special needs and bill money alone each month is very hard to come by. Levi has gotten lots of special equipment as his disease had progressed  and gotten worse. 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 can only lie down and wait, that is unless we can spread awareness and get a cure paid for!! Also to get some help in paying for his medication and help his family make trips to see special doctors and try new medications that become available and help give him as much time as possible to hope for a miracle to come and a cure to be found and received. Any help he can get will be greatly appreciated and please share his story. Levi is the happiest and most loving baby. We would give anything to spend as much time as possible with him and these medications and medical trips will help us do just that. Prayers, thoughts, and sharing this will also help him extremely. We just are hoping for his MIRACLE!