June 21st 2024.
Emma sat on the couch with her daughter Mya snuggled up next to her. They were surrounded by toys and books, as Mya's condition made it difficult for her to play with more physically demanding activities. Emma looked at her daughter with love and pride, knowing that Mya had been through so much in her short five years of life.
"People always ask me why I chose to have Mya, despite her having brittle bone disease," Emma shared with a sigh. "But what they don't understand is that I didn't choose to have her, she was a beautiful surprise that came into our lives. And why would I not keep her? She's my daughter and I love her just the way she is."
Mya was born with osteogenesis imperfecta, a rare genetic condition that affects her bones. Emma explained that Mya's bones were extremely fragile due to a missing protein responsible for bone structure. As a result, Mya had broken so many bones that her parents had lost count. She had also undergone multiple surgeries and had to use a wheelchair to get around.
As a clinical nurse specialist, Emma used her knowledge and experience to share Mya's journey on Facebook, in hopes of raising awareness about her daughter's condition. However, along with the positive responses, Emma also received ignorant remarks from strangers both in person and online.
"It's heartbreaking to hear the things people say about Mya," Emma said, her voice tinged with sadness. "They don't understand that she can't participate in physical activities like other children her age. She can't even bounce on a bouncy castle or play sports. We have to be extra careful and supervise her at all times to prevent further injuries."
Mya had also undergone surgeries to help strengthen and support her bones, which were painful and had a long recovery process. But despite all the challenges she faced, Mya's spirit remained unbreakable. Emma proudly shared that Mya's cheeky personality and infectious laughter always brightened up their home.
In March, Mya took her first steps again after being unable to walk for several months following her surgeries. Emma and her husband Louis took her to Disneyland Paris, where Mya was able to experience the magic of walking and playing like other children her age.
"Mya's osteogenesis imperfecta may make her life more challenging, but it doesn't define her," Emma beamed. "She is a happy, determined little girl who continues to amaze us every day. We wouldn't change a thing about her."
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