Being sick is no mean feat.
But experiencing the lows of poor health while raising children is a whole other story.
Bianca Bassett is a mum of three and a disability consultant who is sharing her lived experience with others in the hope to make a difference. And when you hear Bianca's story, you'll understand why.
In 1980 when she was born, Bianca was found to have a rare genetic blood disorder, called Pyruvate Kinase Deficiency. It meant that her bone marrow doesn't produce enough red blood cells, and the red blood cells that it does produce die in half the time. Globally, there are only about 200 people diagnosed with the condition.
There are six known cases in Australia.
"As a baby, mum took me to the maternal health nurse as I was quite jaundiced and looked really yellow. After a couple of weeks, they discovered I had this condition. It's all I've ever known," Bianca said to Mamamia.
Watch Mamamia's blood donation day: Giving blood saves lives. Post continues below.
So from the age of six weeks, Bianca has had to get regular, often monthly, blood transfusions since.
"My whole life has looked like this. Every month I would visit my local medical centre, arrive at eight in the morning and get my three units of blood," Bianca said.
"Sometimes you can feel quite ill afterward: it's hard to explain, almost like when you've drunk far too much water and you just feel extremely full and a bit queasy."
As for how Bianca would pass the time as a kid? Some schoolwork, read a book or watch daytime TV.
But when Bianca became a mum at the age of 20, her transfusion visits were a bit more complicated.
"I knew that when I had kids, they would have to get used to hospitals because it was such an integral part of my life. I'm always in hospitals for blood transfusions or tests so they often came with me," she shared to Mamamia.
"The hospitals and medical centres were initially really nervous about having my kids there, around the dozens of other patients. So I made it my mission to get my three kids used to the space and grow up thinking these places were a normal part of life. We kept them busy with anything we could: games, puzzles, feeding time. We didn't do some of the things that 'normal' families did: sometimes a day out for us was sitting in the hospital waiting for their mum to finish a blood transfusion."
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As Bianca so perfectly put it: "I think as mums we have so much initiative and have to come up with random s**t to keep our kids entertained."
When her children were younger, Bianca also had the support of her husband.
"I was really lucky. Their dad was amazing, he was very hands-on with a lot including bottle feeding, as I couldn't breastfeed due to my blood condition."
Sadly in 2012, Bianca's husband died at the age of 39 from bowel cancer. It was a hard blow to the whole family. The impact was felt in all facets: emotionally, physically, mentally and also logistically.
"I think because of my illness and the fact the kids grew up with that loss, it kind of made our family unit a little tighter."
Then in 2016 at the age of 36, Bianca experienced a serious health scare.
She contracted a rare fungal condition which left her in a coma fighting for life. When Bianca woke up, she realised her left leg had been amputated following complications with the rare fungal disease.
"You couldn't make this s**t up. It was a lot," Bianca said.
Trying to find her 'new normal' was a journey.
"I had a super rare blood condition, I had an amputation, and it still wasn't enough to receive support or Centrelink," she noted. "Even after losing a leg, I wasn't classed under their classifications as 'being disabled'. Losing a limb made up ten points on their system, and you need 20 to be fully recognised. Part of me felt like asking: 'so you're telling me I need to chop off my other leg to make the cut?"
People with disabilities often have to overcome countless barriers in life: in the workplace, in the community, with relationships, transport, the list goes on.
Not to mention in this day and age with COVID.
"Because those in my position already have low immune systems, a lot of us are frightened about COVID. I've lost friends and family to anti-vax sentiment. It feels personal because it's my life. My doctors have explained to me that if I get COVID from someone who's double or triple vaccinated, I'll probably get sick but I'll survive. If I get COVID from someone who isn't vaccinated, I'm in trouble."
Given Bianca now has this first-hand experience, her goal is to champion causes close to the hearts of those who have a disability.
"A close friend of mine is blind and he just couldn't get a job. So now he is an artist who has his own business making pottery, and it's been really successful. You see lots of people with disabilities becoming entrepreneurs, which is amazing: but it's often because nobody will give them a go in the workforce. It shouldn't have to be like that," Bianca noted to Mamamia.
"As a disability consultant I now get to have great conversations like this and champion the importance of blood donation and disability inclusion - it's a win/win! Diversity is one thing, but inclusion is just as crucial, making sure people feel comfortable in these spaces. As for blood donation, one in three people will need blood at some stage in their life: if you can donate, you will save lives."
Bianca said that if telling her story impacts just one person for the better, then she's done her job.
"Life is so, so precious. And I think the work I'm now doing is benefiting something bigger than me. That's the hope."
For more from Bianca or to buy her book, visit her website.
You can keep up with Bianca via her Instagram.
Feature Image: Supplied/Lauren Anderson Photography.
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