3-Year-Old Suffers from Sturge-Weber Syndrome

Emmanuel Asiedu

“Emmanuel’s first uncontrollable grand mal seizure lasted for 30 minutes”

Emmanuel was only one year old when he had his first seizure. He cried uncontrollably, prompting his frightened parents to take him to the ER. Emmanuel was admitted, and the next morning he had his first grand mal seizure. It lasted 30 minutes before his doctors could get it under control. After another four seizures, Emmanuel was diagnosed with Sturge-Weber syndrome (SWS), a rare congenital and neurological disorder usually indicated by a port-wine stain birthmark on the forehead and upper eyelid of one side of the face. However, Emmanuel suffers from specifically Type 3 SWS which has no facial markers and is only identified through brain scans.

Doctors ran a series of EEG tests on Emmanuel for two weeks to see if they could pinpoint where his seizures were originating from in his brain, but were unsuccessful. The neurological concerns associated with Emmanuel’s condition relate to the development of excessive blood vessel growth on the surface of the brain called angiomas. These angiomas create abnormal conditions for brain function, and seizures are the most common first sign. A weakening or loss of the use of one side of the body may develop as well. Developmental delay of motor and cognitive skill is also known to occur.

To manage his illness, Emmanuel is on anti-seizure medications. He attends both physical and speech therapies twice a week to correct the paralysis on his right side and to teach him to walk again. He lost these abilities as a result of the seizures he experienced.

Emmanuel is a loving and imaginative three year old boy. He loves books and playing with his action figures. Captain America and Spiderman are his favorite superheroes. Emmanuel is also a fan of Mickey Mouse, Cars and Toy Story.

Kids Wish Network is hard at work planning a once-in-a-lifetime experience for Emmanuel; make sure to stay up to date by checking back soon for all of the magical details of his marvelous wish!

 

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Kids Wish Network is a charitable organization dedicated to infusing hope, creating happy memories, and improving the quality of life for children having experienced life-altering situations. Kids Wish Network assists children and their families through several key programs.