Mom Captures the Shocking Moment She First Realized Her Baby Daughter Went Blind (Exclusive)

NEED TO KNOW

• A sweet birthday tradition with her daughter ended up becoming a heartbreaking moment for one family

• In a video shared on TikTok, Canada-based mom Amanda Burritt captured the moment she realized her daughter was likely blind

• She tells PEOPLE her “heart broke” in that moment

A sweet birthday tradition with her daughter ended up becoming a heartbreaking moment for one mother.

In a video that Canada-based mom Amanda Burritt, 39, shared on TikTok, she and her partner Jamie Shingleton, 38, can be seen celebrating their daughter Emma’s first birthday. The pair sang Happy Birthday while placing a small treat with a flashing blue “happy birthday” sign in front of their daughter, who sat in a high chair.

When Burritt noticed the then 12-month-old wasn’t looking directly at the birthday dessert, she tells PEOPLE she realized that her daughter was likely blind.

“I was shocked,” she shares. “It was only around her first birthday when it started to get noticeable, so it felt like it came out of nowhere.”

“My heart broke, but I naively prayed that we would be able to help her vision in some way or another, like with glasses or some sort of surgery, once we had definitive answers,” adds the mom of two. “I started doing a lot of vision therapy with her and came up with so many DIY light-up crafts to help stimulate her eyesight.”

Leading up to her first birthday, Burritt explains that she started noticing that her daughter was falling behind in some of her growth milestones. However, she says Emma’s vision was never a concern for them.

“Everyone kept saying, ‘Don’t worry, kids develop at their own pace,’ ” she says. “Despite this, I self-referred her to early intervention to help catch her up to her peers. It wasn’t until around her first birthday that we started noticing signs of vision impairment.”

“We had an appointment with her pediatrician just days before this video was filmed. She was also concerned about the lack of awareness of Emma’s environment (as well as other things), and she referred us to our children’s hospital to see a neurologist, ophthalmologist, as well as a geneticist.” 

While Burritt and Shingleton waited for those upcoming doctor’s appointments, they decided to schedule Emma for a trip to the optometrist as well. Burritt tells PEOPLE they came out of that appointment “even more confused” about her daughter’s development as the doctor told them her eyes were perfectly healthy.

“The only thing he noticed was ‘pale’ optic nerves, which can mean a number of things,” she says. “Of course, as soon as we got home, I went down a rabbit hole of what it could be or what could have caused it. At the time, we didn’t want to believe she was blind, so we held onto hope that was not the case.”

The following month, Burritt says they spent five days at a children’s hospital as Emma went through a series of tests and met with specialists. The results found that Emma had optic nerve atrophy and likely cortical vision impairment. Neither of those diagnoses can be cured or treated, so they were advised to undergo genetic testing.

Six months later, Burritt and Shingleton received the official diagnosis that their daughter had KIF1A-Associated Neurological Disorder, an extremely rare neurodegenerative genetic disease.

“This confirmed that Emma was likely not born blind. Her eyesight progressively got worse in the first year of her life, which is why we all missed the signs,” she explains. “This also meant that Emma had a lot more than just [a] lack of eyesight working against her.”

Despite the news, Burritt shares that she started feeling “more hopeful” about her daughter’s future after the initial shock wore off.

“There are so many people in the world that live full healthy lives with low vision,” she says. “I was willing to do whatever it took to help her navigate the world as she knew it.”

Since then, Burritt has started to share her daughter’s story at KIF1A fundraisers to help fund research for potential treatments and post on social media to spread awareness about Emma’s disease. Over the years, the mom of two tells PEOPLE that her social media accounts have provided a community of love and support, despite some of the negative comments she may receive.

Now, at 6 years old, Emma is blind, non-mobile, non-verbal and has epilepsy. She has spent countless hours doing different types of therapy and traveled across states, along with her family, to try out different therapy clinics. Despite her circumstances, Burritt says Emma is “the happiest girl you will ever meet.”

“She attends a specialized school for disabled children where they incorporate her therapy into her learning environment,” the proud mom tells PEOPLE. “She does adaptive horseback riding and even has her own Robotic walker. She loves swimming, music and traveling! She has a little sister named Callie who is her biggest cheerleader [and] best friend.”

“Despite all of her challenges, she remains the happiest girl you will ever meet and radiates joy everywhere she goes,” she adds. “The happy little girl you see in the video is the same happy little girl today, and for that I am grateful.”

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Reflecting on her journey with Emma, Burritt tells PEOPLE that being a parent to a child with a disability is “extremely hard.” However, she describes it as the “heaviest yet most beautiful responsibility.”

“Being disability parents is extremely hard. It changes every single thing about you. It challenges you in so many ways that unless you’ve been through it, people can’t fully understand,” says Burritt. “It has opened my eyes to a world I never knew and truly shown me what is important in life. It is the heaviest yet most beautiful responsibility I’ve ever had to carry.”

As for her fellow parents experiencing similar situations with their children, Burritt encourages them to be their children’s “biggest advocate.”

“You are your child’s biggest advocate. If you feel something isn’t right, push for answers. And if you don’t get them, never give up,” she advises. “This life is not something anyone ever expects to happen to them, but it really can be beautiful.”

“I try to count my blessings every day and give my girls the best life possible given our circumstances,” Burritt adds. “The smiles on their faces always remind me that our life is good.”

Read the original article on People