From Tayah’s mother:

This is my little Tayah and we want to give her every chance she can have in life. She’s full of light, and is super special, and has taught me so much in her little life already. She’s 5 months, and she’s a twin. Her twin brother was not affected by this rare condition, but my beautiful Tayah is. This is a little bit about the rare condition Tayah carries:

GM1 gangliosidosis is an inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.

The signs and symptoms of the most severe form of GM1 gangliosidosis, called type I or the infantile form, usually become apparent by the age of 6 months. Infants with this form of the disorder typically appear normal until their development slows and muscles used for movement weaken. Affected infants (developmentally regress) and may develop an exaggerated startle reaction to loud noises. As the disease progresses, children with GM1 gangliosidosis type I develop an enlarged liver and spleen (hepatosplenomegaly), skeletal abnormalities, seizures, profound intellectual disability, and clouding of the clear outer covering of the eye. Loss of vision occurs as the light-sensing tissue at the back of the eye. This abnormality is called a cherry-red spot. In some cases, affected individuals have distinctive facial features that are described as “coarse,” enlarged gums. Individuals with GM1 gangliosidosis type I usually do not survive past 2 year of age

Please help give her every chance she can have at life!

Sadly, Tayah took her last breath at 11:54 pm on the 15th of April 2019.