Rayan Ahmed was a happy baby, crawling and scooting all over the house - until Rett Syndrome, diagnosed in Rayan at just six months old, stiffened his limbs and silenced his voice.
Rayan passed away from Rett Syndrome at the age of nine, and his sister, Columbus High School senior Jannat Naveen, wants to make sure her brother and his courage battle are remembered. Naveen and her family moved from St. Louis, MO to Columbus in 2017.
To remember Rayan during the Rett Syndrome Awareness month of October, Naveen organized the first Remembering Rayan fundraising event, set for Sunday, Oct. 13 at 12:15 p.m., immediately following service at St. Paul Lutheran Church.
The church is located at 201 Veterans Drive in Columbus.
A meet and greet with light lunch will take place until 12:30 p.m., following by an introduction by Naveen and a presentation by Dr. Bart Klaus, MD.
Donations will be accepted from 1 - 1:15 p.m.
Proceeds will go to RettSyndrome.org, where Naveen is a volunteer.
“I just wanted to find a way to remember my brother. I have been inspired by other fundraisers I’ve seen in Columbus. I hope people will come and we can make this an annual event,” Naveen said.
Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs primarily in girls and more rarely in boys. Rett syndrome leads to severe impairments, affecting nearly every aspect of the child’s life. The effects of the disorder are often most aggressive in boys, as was the case with Rayan.