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Health & Fit Mom dresses up as Lady Gaga to 'create visual memory' for her daughters losing their sight

01:15  01 november  2019
01:15  01 november  2019 Source:   yahoo.com

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After an Ohio mom's daughters, who were born deaf, received cochlear 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 5- and 2-year-old girls lost their father — a pilot in the U.S. Air Force — in a plane crash. Not long after that, both daughters failed a vision screening at their school.

a person wearing a hat: After learning her two daughters suffer from a rare genetic disorder that causes deafness and blindness, mom Anna Chambers set out to create visual memories by posing in Halloween costumes she would have said © Provided by Oath Inc. After learning her two daughters suffer from a rare genetic disorder that causes deafness and blindness, mom Anna Chambers set out to create visual memories by posing in Halloween costumes she would have said "no" to before. (Photo: Anna Chambers)

Anna Chambers' 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.

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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."

a little boy that is standing in the grass: Ava and Stella Rose, sisters who have Usher syndrome, were born deaf. Now, their mother, Anna, is ensuring they have © Provided by Oath Inc. 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.

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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."

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Even though Ava and Stella Rose are entering eighth and sixth grades, 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 friend Megan Massingill Engelmann.

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"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 of Sisters for Sight, hopes to raise awareness of her daughters' type of Usher syndrome (Type 1B) and has recently teamed up with Save 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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