Friends with rare disease meet for the first time

Posted at 11:25 PM, Nov 16, 2017
and last updated 2017-11-17 10:27:47-05

It's safe to say Annie Leeds and Kenley Montez have a strong friendship. Most of their time together is spent playing with American Girl Dolls.

“It feels like I've known her all my life,” said Annie.

The two 13 year olds have only known each other for a year. They met when their mothers connected on Facebook.

“It's awesome they keep each other going,” said Libby Leeds, Annie’s mother.

“It's so rare, there's not a lot of people around that are like them,” said Sabrina Montez, Kenley’s mother.

The two friends are alike because they both have a rare disease, Kearns-Sayre Syndrome. It's a mitochondrial disease that's left the two girls legally blind and hard of hearing, among a host of other symptoms.
The two are different because they live nowhere near each other.

Annie lives in Lockport.  Kenley lives in California.

Most of the time, they Facetime.

“It's nice to have a friend who knew what it was like with the disease and stuff, even though she lives across the country,” said Annie.

“We Facetime all day after school,” said Kenley.

“I think it's even made her feel better, like healthier, just because she has this awesome little friend that they talk six hours a day,” said Libby.

For a Make-A-Wish, Kenley chose to visit New York City for the American Girl Store and Lockport to see her friend and play with American Girl dolls.

The wish led to one face-to-face meeting, these two won't forget; no facetime required.

Starting this weekend, Annie and Kenley will go back to speaking with each other over their iPads. But, for a few days, these two, who know exactly what the other is going through, got the chance to be regular friends.