Mackay twins Ella and Lavenia Uluakiola diagnosed with leukaemia
A Queensland family has received a second devastating blow with their second twin daughter diagnosed with leukaemia just one year after her sister.
Mackay
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A Mackay family is facing an unimaginable battle after their three-year-old twins were diagnosed with a fast-growing blood cancer one year apart.
Mum Anna-Marie Burki said her once playful and energetic girls, Ella and Lavenia, were now in the biggest fight of their young lives after being told they had Acute Lymphoblastic Leukaemia - a cancer where the bone marrow produces too many immature white blood cells.
A year ago, the family was dealt a crushing blow when doctors discovered then two-year-old Lavenia had cancer.
She said the family was told Ella, who was clear at the time, was at a higher risk of developing the same disease because the two girls were identical and had shared a placenta.
This meant Ella needed blood testing every three months for the year.
Almost one year on and now aged three, Lavenia had been doing well with her treatments and the Ms Burki said she was preparing to go back to work and welcome some normalcy back into their lives when everything changed in an instance.
Just two weeks before hitting the one year mark Ella also began feeling sick and experiencing leg pain - so their oncology nurse in Mackay suggested she be retested early, this is when the second heartbreak came for the family.
Devastatingly, Ella was also diagnosed with Acute Lymphoblastic Leukaemia.
The news turned their world upside down for the second time, with Ella flying from Mackay to Brisbane to receive treatment.
“The first one was hard enough, very overwhelming. You hear stories of, unfortunately, other families going through it and what it can involve and I didn’t know how bad it could get until she was diagnosed and we got informed more about the disease,” Ms Burki said.
“It just breaks our heart that they have to go through this.”
Ms Burki said the girls were still too young to understand what was happening to them but spending so much time away from home and in and out of hospital was tough on all of them.
“Going back in the hospital constantly for appointments and treatment, they sometimes just get triggered straight away when you go in, which makes it a lot harder,” she said.
The fact that Lavenia and Ella had each other was a source of comfort for Ms Burki who said they could tell when something wasn’t right with their twin.
“They would cuddle each other occasionally, but generally if they were sitting, they couldn’t sit right next to each other, they would fight like, no, this is my spot, that’s my spot, but when they came down to hospital, they both just sat next to each other and were holding hands and cuddling,” she said.
“So that already told me that they knew something was wrong, Ella knew something was wrong with her sister, she was there for her sister.
“And then the same thing happened when we came down with Ella, and she was in the hospital bed. Once dad and Lavenia got there, they were sitting on the bed together, cuddling.“
Ms Burki knows all too well the special bond twins share as a twin herself.
She said her identical twin sister Ramona had been a huge source of support over the past year, jumping on planes to stock the freezer full of food and spend time playing with her nieces when they needed her most.
“We’re very lucky that we both have really great families,” she said.
“And at home in Mackay, we have a great community support, not just amongst our friends and family, but the wider community as well.“
Ms Burki was emotional when reflecting on how she had stayed strong through the most challenging ordeal of her life, saying it was Ella and Lavenia who were getting her through each day.
“They need me, so I need to be strong to be able to help them get through this,” she said.
“If I fall apart and can’t help them through this then what chances am I giving them? If I’m not on top of everything to give them the best chance moving forward.
“So I need to be strong.”
Ms Burki made the decision to set up a GoFundMe after receiving Ella’s diagnosis for some immediate financial support while they went through the process of applying to different charities.
She said the financial weight of the situation was extremely heavy.
“We reached out to our friends and family through the GoFundMe to help and they’ve all been so generous and it means the world to us to have not just our friends and family, some people that we even know us donating as well to help us out,” she said.
While their travel to and from Brisbane for treatment and their accommodation near the hospital is subsidised she said the time that she and her partner were having to take off of work would significantly impact them with her partner who usually travels for work having to move to a different role within his workplace so he can be home with his family.
Ms Burki said the family was hoping to travel back to Mackay in the next few weeks and despite incredible support from charities and hospitals in Brisbane they were eager for home comforts.
“I think it will be great for all of us, we’ll have more immediate friends and family support,” she said.
“Just that, that familiarity of friends and family at home will just make it more comfortable for all of us, I think.”
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