Wednesday, February 27, 2013

Super Casen

Super Casen


Today, on Rare Disease Day, it is our pleasure to introduce you to Super Casen - an Extraordinary TinySuperhero living with a Rare Disease.

Super Casen is six years old, hails from Texas, and is a big Texas Longhorns fan! Casen was born on January 15th, 2007. He was the perfect baby boy. Casen's first three years of life went as every parent dreams - sitting, rolling, eating, babbling, crawling, walking, talking...Everything was normal until he had his first seizure a few days before his third birthday

Between November and December of 2009, Casen had more seizures, including 3 on Christmas Day. At this point, Casen's parents were very concerned, but had little direction as to what was wrong. They had been to many doctors, but after several seizure-induced ER visits, they were finally directed to a neurologist at Medical City - Children's Hospital in Dallas, Texas.

Casen proceeded to go through every test you could think of and several seizure medicines without any results as to what was causing the seizures. By this time, Casen's development was regressing. He was given speech therapy  to try to help, but by 2011, at 4 years old, Casen was no longer walking and had lost all of the language he had developed.

On June 21, 2011, Casen's family got answers - the kind of answers that all parents dread. Casen was diagnosed with Late Infantile Batten Disease. Earlier we introduced you to Super Elijah, who has Infantile Batten Disease, where symptoms ususally appear between 2-6 months of age. Casen has Late Infantile Batten Disease, which presents symptoms between 2-4 years of age. Batten disease is an inherited disorder of the nervous system. It is not currently preventable. Both forms of Batten Disease are fatal and at this point there is only experimental treatment and no cure. Children with Late Infantile Batten Disease usually lose the battle between age 5-12. 

Casen carries a very special super power through this fight, which enables his family to keep hope for a cure - he has a smile as big as Texas! Children with Batten Disease have shown that they recognize voices of family members by smiling, and smiling is Super Casen's forte. 
Super Casen is fighting the clock and he, along with the other children suffering from Batten Disease, hold onto the hope that a cure can be found in time for them. As is typical with Batten Disease, Super Casen has already lost his mobility, speech, and eye sight. He just recently had tests that showed his kidneys are still functioning properly. Casen's family has not given up hope for a cure, but more funding is needed in order to initiate more research and testing.

Super Casen is an Extraordinary TinySuperhero with a wide reach. He is SO loved by his parents, family, and friends. He even has over 10,000 people showing him love on Facebook
So, on Rare Disease Day, what can you do for Super Casen and his family?

1. Show Super Casen love and let him know that you think he is indeed an Extraordinary TinySuperhero. Write him a note on his Facebook page -this type of encouragement is uplifting and rejuvenating to a TinySuperhero's family. His Facebook page is

2. Share Super Casen's story and help them in their Crusade to raise awareness about Batten Disease and other Rare Diseases.

Thank you for helping us love and empower this Extraordinary TinySuperhero.

Click here to donate a cape to another Extraordinary TinySuperhero fighting a Rare Disease.

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