So I hope someone reads this, and passes it on.
Theres a little girl named Marissa who suffers from Infantile Spasms and needs help. Theres a good chance you probably don't know what Infantile Spasms are, neither did I, but let me explain. An infantile spasm is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs. Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age five, but may be replaced by other seizure types. Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, making it important to identify the underlying cause. In some children, no cause can be found.
Treatment is expensive, to say the least. This little girl has been dealing with this, pretty much her entire life. And her surgery is very very expensive. $1 million or so before insurance, and the family has already shelled out thousands of dollars before this.
So I suppose what this journal is about is about helping this little girl and raising awareness of this disorder.
If you have anyway you can contribute to this cause please do! Anything helps! Heres a link to her page. www.marissasbunny.com/Marissas…