Eli was born in the summer of 2014 and developed like a typical newborn- smiling, cooing, sleeping, and eating. He loved getting tickled with his mommy’s soft hair and getting hugs and kisses from his family. At his six-month check up, we noticed that he was struggling to roll over, reach for toys and babble (make sounds). Eli continued to struggle with reaching his milestones at every check up. In November of 2017, after months of unanswered questions and tests, Eli was diagnosed with a genetic mutation on IRF2BPL (a currently nameless and rare disease). A geneticist explained that this rare neurodegenerative disorder had no treatment options or cure and would leave Eli a silent prisoner in a lifeless body. Our lives were shattered! Every doctor we visited said the same thing, “We don’t know anything about this disease. There just isn’t enough information. There is nothing we can do for him, there is no cure.”
Eli is the youngest of 2 boys to parents, Sanam and Behdad. Eli’s older brother Aaron, is 6 years old and attends elementary school. Eli and his brother are true best friends. They ask for each other first thing each morning. Aaron starts the day by saying to Eli, “Give Aaron a hug and a kiss.”. Together they form an unbreakable bond. If you ask Eli his name, he says, “My name is Eli, my brother’s name is Aaron.”, as though one cannot exist without the other.
Eli is a very energetic and playful kid. He loves Superheroes! His favorite characters are the P.J.Masks and he loves to run around the house imitating them. Eli is the most loving and pure child. He LOVES hugs and kisses and asks for them frequently. He loves to love! To know Eli is to know kindness, happiness, unconditional love and joy for life.
The world needs kids like Eli. We are fighting to allow his personality and soul to shine and for him not to become a prisoner of his body.
