Meet the 'Medical Mums' documenting their sick kids online.

"We're medical mums, we can't just find a babysitter, we have to find a nurse."

"We're medical mums. Of course, we've spent major holidays in the hospital."

Meet the mums who dedicate their lives to caring for their medically complex children. From day-in-the-life videos to nighttime routines and healthcare checkups, they cover it all.

Motherhood is a difficult job as is, let alone when your child has a chronic illness or disability. For medical mums, community and connection is everything.

Listen to more on medical mums on Mamamia Out Loud. Post continues below.

Why medical mums post.

When Brooke's daughter Everly started having seizures at four months old in 2021, she went searching for answers online.

Genetic testing results confirmed it was Dravet Syndrome, a rare catastrophic and medication-resistant form of epilepsy with a 20 per cent mortality rate before adulthood.

"When I researched this condition online, nothing positive came up no matter how long I searched. My hope was gone, my spirit was broken, and I've never felt so scared or alone," the Melbourne mum tells Mamamia.

"I was going through the 12 stages of grief, but my child was still alive. I didn't understand my own emotions."

Driven by love, desperation, denial and fear, Brooke figured if she couldn't find her community, she'd create one — and it's grown to 276,300.

"I was terrified every second of every day, but I still had to be strong for my children. So I started sharing our journey, to educate, to raise awareness, to bring attention, to talk about my day-to-day and to hopefully help find a cure," she said.

Sitting in the neonatal intensive care unit in Queensland's Fraser Coast, La Toya had a similar experience. She was scared, isolated and depressed as message after message flooded her phone for updates on her daughter Luna, who was diagnosed with Kleefstra Syndrome — a rare genetic disorder characterised by intellectual disability.

La Toya and Luna. Image: Facebook/Warrior Princess Luna.

La Toya initially started a Facebook page to update friends and family and process the overwhelming amount of medical jargon that became her new reality.

"It was a lot to take on board so I wrote to Luna via diary entries, that way one day I could show her all that she endured to be here today but also that way [my partner] could process it in his own time and it single-handedly saved my relationship," she tells Mamamia.

"We spent 110 days in hospital when she was first born, she wasn't meant to make it and we were told numerous times she wouldn't."

Like Brooke, La Toya saw medical mums sharing their journeys online and felt empowered watching them speak. So, she did it too. Now, she reaches 16,400 people on her page @warriorprincessluna.

Turning to TikTok for connection.

The medical mum community often faces criticism from people concerned they are profiting off their children or "using them for clout". But for these mums, finding others who have walked in their shoes helps on their darkest days.

"Most people couldn't even begin to comprehend what we do in a single day behind closed doors and now because I share it, they can," Brooke said.

"Prior to having Everly, I was always scared of saying the wrong thing to medically complex or disability families, I didn't want to upset them so I just said nothing at all.

"Now that I live this life I realise that is one of the worst things you can do, is to ignore us out of fear.

"I want to show people that we value when you ask questions, want to learn about our children and show interest in our journey. Every mother loves talking about their child, it just looks a little different for us."

Watch: Life as a medical mum. Post continues below.

It's not about chasing fame, she says. This is simply their reality shared online. Day in and day out, they're there for their kids who can't advocate for themselves. By spotlighting this, they're showing other mums they're not alone.

"This community is everything to me. It has saved me on more days than I can count," La Toya said.

"It's lonely out here and not many people get it unless they have walked in our shoes. They say it takes a village to raise a child and not all villages look the same. Knowing I have people to relate to on days that it all seems too much makes the load a little lighter."

Brooke compares it to the peak of the pandemic, when everyone was stuck at home during lockdown. Only for medical mums, the lockdown never lifted.

"For medically complex families, it is our reality every day. We are isolated, exhausted and lonely. To be able to go online and reach people who know what you are going through is invaluable for our mental health," she said.

"There have been times I've been on night watch for my daughter, struggling to stay awake, stuck inside my own thoughts and so scared for what might come. I hop onto a TikTok live or I post a video, and I'm immediately surrounded by my community, I am embraced by them, I am safe with them. They lift me up and make me laugh during times I never thought I'd smile again."

Brooke and her daughters.

What life is like as a medical mum.

In Brooke's own words, this is what being a medical mum is about.

It means sleepless nights and constant appointments, being in and out of hospital without any notice. It means sacrificing everything I have ever known and grieving the life I had planned out whilst trying to accept and make the most of the one I've been given.

It's pinning my child down for yet another test and putting on a brave face for her. Only to break down behind closed doors on the bathroom floor.

It's slowly losing all the people that were so close to me in life because I had to cancel that catch-up for the 20th time.

It's spending every single minute on guard and alert because I have to be ready at any moment to save my child's life.

It's sleeping two to five hours a night for years on end because my child needs constant monitoring.

It's living with complex traumatic stress disorder from everything I have seen my child go through.

It's going out in public for the first time in months and having people point, whisper and stare and not know how to handle that when it's my child they are whispering about.

It's advocating against an overwhelmed healthcare system, so my daughter doesn't end up at the bottom of the pile.

It's constant emails, phone calls, meetings and pressure.

It's sacrifice, it's exhaustion and it's relentless.

It's letting go of everything you have ever known, because nothing will ever be the same again.

And from La Toya:

It's living a life you don't know about until it happens to you.

It's advocating for your child like their life depends on it.

It's celebrating even the smallest milestone because in our homes they are huge.

It's different, it's heartbreaking, but it's beautiful, in the most unique way.

Feature image: TikTok/@audreykandil and @medicalmumma.