A doctor once deemed her incompatible with life. Toddler Everleigh Hall amazes family, ‘defies all the odds’

Brodi Lewis has never heard her daughter Everleigh Hall cry, laugh or even babble.

The Hamilton toddler will occasionally let out a belly wheeze," as Lewis describes them. They come out when she's tickled by her dad or if her older brother is nearby.

But not a single one is taken for granted - each is considered an achievement.

Any time it happens, it feels like the world is going to stop," said Lewis. It's amazing, because it gives me so much hope for her."

Everleigh has Wolf-Hirschhorn syndrome, a rare genetic disorder caused by the deletion of genetic material near the end of the short arm of the fourth chromosome.

She was born with poor muscle tone, narrow airways, holes in her heart, a cleft palate, clubbed feet and developmental delays. She also has a trach for breathing and requires a ventilator.

Everleigh's story first came to the public's attention in May 2020 when her mother began fundraising for life-saving equipment for Everleigh.

The tot spent nearly her whole first year between the neonatal and pediatric intensive-care units at McMaster Children's Hospital before finally coming home in May 2020.

Her parents, Brodi Lewis and Austin Hall, were initially told by doctors that Everleigh was incompatible with life." Then, after she was born, the pair was told she was likely blind, deaf and wouldn't engage.

But two and a half years later, Lewis said Everleigh is overcoming every obstacle - even if it takes time.

Just this past year, she survived cardiac arrest while recovering from a surgery, and did not suffer brain or organ damage after a seizure that lasted nearly two hours.

She still continues to amaze me," said Lewis, in a recent interview with The Spectator. She defies all the odds that come her way."

The accomplishments don't end there.

Everleigh can now sit in a high chair, play with toys, grab things with intention and has even started using a jolly jumper. She's also figured out that she can use both her arms and legs at the same time.

We put her in there and she goes nuts," Lewis said. She's showing us her energy and her personality."

Lewis said she is also one step closer" to becoming more mobile. Born with club foot, both of Everleigh's legs were previously in corrective casts and she had surgery on her Achilles tendon to aid the process.

Everleigh is expected to get leg braces which she'll wear for the next five years to help her walk, among other things, Lewis added.

Her sign language vocabulary has also doubled since last year, and includes: hello, mom, dad, food, more, friend, up, yes, no, kiss, please and thank you. She can sign three-word sentences at her own pace.

There has been so much growth," said Lewis. She has a personality and if you don't do what she asks for, she tells you ... she's an absolute ham."

Lewis said one of Everleigh's biggest achievements is her ability to breathe without a ventilator for a majority of the day - with the exception of nap time.

That meant the family was able to take advantage of the outdoors, go for their long-awaited walks around the block and even leave the house for family outings. Everleigh is severely immunocompromised, so those have been limited amid the pandemic.

Despite all of Everleigh's progress this year, Lewis said there have been some challenges.

If you follow Lewis on social media, you might have noticed she's gone quiet in the last few months - a stark difference from a feed that was once filled with updates on Everleigh.

Lewis would take photos and make videos, all with Everleigh front and centre. She'd get tons of likes and comments describing her as a supermom."

But add in the balancing act of caring for a medically fragile child, ensuring her family was looked after and dealing with personal issues, Lewis said she found herself overwhelmed" and struggling to fit the bill."

It was just a lot," said Lewis. I had to pick and choose what was going to stay and what was going to be put on hold. And my priority is always her and my boys."

Lewis said taking a break from social media has allowed her to get to know Everleigh better, work on her own mental health and ultimately feel more like herself. She does plan on returning to social media eventually, but not until she's ready.

I need the gas in my car," she said. We can't go anywhere if my tank is empty."

Lewis said their hopes for the coming year are high. As Everleigh gets stronger, there is hope they can get her a speaking valve, which attaches to the outside of the trach.

She may not be verbal, but it will allow her to be vocal - meaning her daughter could discover" her voice.

I would give anything to hear her cry," said Lewis. She has shown us so much of what she can do. She is amazing."

Fallon Hewitt is a reporter at The Spectator. fhewitt@thespec.com