As many of you know, Amyn has Rasmussen’s Encephalitis. Rasmussen’s is a rare neurological condition that affects about 1 in 750,000 children between the ages of 14 months-14 years old. Amyn started off with seizures November 2020 at the age of 9. His seizures started off very aggressive. This caused weakness on his right side within a year. By 2022 it was causing mental impairments as well. 

Amyn had his first seizure on November 24th, 2020 and diagnosis started out as autoimmune focal epilepsy, with his initial EEG on Christmas Eve marking the beginning of a new chapter. By New Year's of 2021, our once healthy child was now facing epilepsy. Throughout 2021, his seizures brought fear and uncertainty, with an alarming frequency of 8-10 seizures per minute according to his EEG. Witnessing up to 10 visible and uncontrollable seizures on any given day was a harrowing experience for him and our family.

In 2022, we discovered that Amyn has Rasmussen’s Encephalitis, a rare neurological condition that affects 1 in every 10,000 children up to the age of 10. This condition was causing weakness on the right side of his body. The only solution to this condition was surgery. On April 27, 2022, Amyn underwent a hemispherectomy, during which the front left part of his brain was separated from the rest. The surgery was successful, and we are now celebrating 2 years of being seizure-free.

Amyn and Anthony are my reasons for getting up and having determination to live my life. After watching Amyn go through something so traumatic, how could I be still? This gave me some motivation to make life better then how it felt or how it looked. Finding a new journey along this trail of life is the only way to keep living.

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