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After an Ohio mom's daughters, who were born deaf, receivedcochlear implants, a device that provides those with moderate to profound hearing loss with a modified sense of sound, they were thriving. Shortly after the procedure, however, the then five- and two-year-old girls lost their father a pilot in theUnited States Air Force in a plane crash. Not long after that, both daughters failed a vision screening at their school.

Anna Chambers's daughters, Ava and Stella Rose, were diagnosed with a rare genetic disorder,Usher syndrome, the leading cause of combined deafness and blindness. With no cure, Ava, 14, and Stella Rose, 11, will ultimately be robbed of their sight.

With their diagnosis and the death of their father, Capt Jeff Haney, the "holidays had lost the sparkle, according to Anna.

The diagnosis was a curveball I was not expecting after the tragic loss of their father," Anna tells Yahoo Lifestyle, adding that the family had left Alaska where Haney was stationed, to move to Ohio, after his death.

"It was overwhelming for me as a mother, and I just knew I needed to start some new traditions for our new life," Anna says. "To bring back a little joy."

Ava and Stella Rose, sisters who have Usher syndrome, were born deaf. Now, their mother, Anna, is ensuring they have "visual memories" as their eyesight deteriorates. (Photo: Anna Chambers)

Growing up, her girls had always asked their mom to dress up with them on Halloween. Typically, without having the time to put together a costume for two young children and herself, she'd toss on a simple item, like a cowboy hat, to go trick-or-treating.

Anna tells Yahoo Lifestyle that dressing up was "always something I said 'no' to," but following her daughters diagnosis, she "wanted to start saying 'yes' more."

The sisters' eyesight has already begun to deteriorate, causing night blindness and other issues.

"After realizing their vision would slowly keep deteriorating, creating visual memories and new traditions for our new life became so important to me," Anna says. "This is where my idea of dressing up to surprise them for Halloween came to me."

Even though Ava and Stella Rose are entering eighth and sixth grade, respectively, and they may be a bit embarrassed by their mom putting together an epic costume, they still talk about what Anna will surprise them with during the months before Halloween.

This year, Anna dressed as Lady Gaga, with the help of her friendMegan Massingill Engelmann.

"I think Lady Gaga was the perfect choice this year. We all love her," Anna tells Yahoo Lifestyle. "My focus with them this year is to make sure they know that God made them perfectly. God makes no mistakes. I hope they will always be true to who they are, no matter what."

Anna, the founder ofSisters for Sight, hopes to raise awareness of her daughters' type of Usher syndrome (Type 1B) and has recently teamed up withSave Sight Now, a foundation dedicated to finding a cure or treatment for childhood blindness related to Usher syndrome Type 1B.

She also hopes that this tradition will always be a happy moment for her daughters.

"I hope that when they are grown, they will look back and it will be a really special memory for them," Anna says. "If they do lose their sight, I hope they will always keep a visual memory of this tradition."

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Here is the original post:
Mom dresses up as Lady Gaga to 'create visual memory' for her daughters losing their sight - Yahoo Food

This entry was posted on November 2, 2019 at 12:42 am and is filed under Eye Sight & Vision. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |