Two Girls with Kearns-Sayre Syndrome Become Best Friends

13-year-olds Annie Leeds and Kenley Montez are two peas in a pod. They both share a love for American Girl dolls. They both suffer from a rare disease, which helps binds their close friendship.

Their mothers connected on Facebook, and their daughters’ shared the same condition, they decided to make the introduction. Although they’ve only known each other for one year, they have become best friends.

Annie feels as if she’s known Kenley her whole life. The two often feel alienated from others because of their rare disease, but now they can share these concerns together and be regular kids.

Annie and Kenley both have Kearns-Sayre Syndrome, a neuromuscular disorder, which is characterized by partial blindness (a salt and pepper pigmentation in the retina). They aren’t completely blind, but have trouble seeing due to the obstruction in their eyes. They also have partial loss of hearing which makes it difficult to communicate.To learn more about it, click here.

Although Annie and Kenley are partially blind and having difficulty hearing, they have no worries when they are together. Unfortunately, it’s a long-distance friendship that has to be carried on through Facetime. Annie lives in New York, Kenley in California.

“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 in an interview with WKBW Buffalo. “We Facetime all day after school.”

When these two are together, their condition seems to disappear. They look like any other happy and healthy kids, who have known each other their whole lives.

Kenley asked for something very simple from the Make-A-Wish Foundation – a trip to New York City, to meet her best friend and visit the famous American Girl doll store.

This wish came true. When they finally met face to face, they had a reunion that is sure to get the water works going. Check it out here.

Before they went back home to continue their long distance friendship, the two got some one on one time for a few days that they’ll never forget. Let’s hope they can see each other again in person.


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