On the outside, Sophia Perera is a fit-looking woman whose smile shows no sign of anything untoward.
But on the inside, she is dying – and there is nothing more doctors can do about it.
The 45-year-old has been diagnosed with a rare form of cancer that only about 500 people around the world are unlucky enough to get.
Officially it is called follicular dendritic cell sarcoma; a type of blood cancer that forms in the soft tissue.
But to Perera, it is simply yet another link to a chain of tragic events that have affected her, husband Cam Warren and their 5-year-old daughter Augustina.
“I’m always asking: ‘Is it something I’ve done? Why me’?
“I don’t know why this has happened to us. It’s too much to bear for one family”.
In November 2014, emergency services were called to the family home in Te Atatū Peninsula, in West Auckland, after the couple’s eldest daughter was hit by a vehicle in the driveway.
Valentina Grace Warren, 3, later died at Starship Children’s Hospital.
“I just can’t believe it,” mum Sophia Perera says.
“I already had something rare happen to me when I lost my daughter in that accident and now this.”
Last August, as Auckland settled into its second Covid lockdown, she started to experience cramps and bloating.
When the pain got worse, Perera sought medical advice and was told the news she did not expect – she had a rare form of cancer and there was no treatment for it.
She underwent four rounds of intense chemotherapy and was preparing for surgery to remove as much of the tumour as possible when she shared her story last December.
With a 10 per cent chance of survival, Perera described it as the last bit of hope she was clinging on to.
Doctors managed to remove the tumour successfully during the operation, but it was a painful process – with Perera in hospital until the second week of January.
A scan in mid-February would result in the heartbreaking final diagnosis – despite the tumour being removed, another more aggressive mass had grown within that month.
This time, there was nothing more that could be done.
“I asked: ‘Is there any way around this? What do we need to do? Go overseas? Change my diet? But it’s so rare there’s no treatment at all”.
Perera started chemotherapy almost immediately after – this time in a bid to prolong her life and thereby have more time with her daughter Augustina.
Mum's special gift for Augustina
The proud mother-of-two is emotional when she speaks about both her daughters and particularly her youngest, who has just started school.
“It’s honestly so hard to try to tell your 5-year-old,” she says, choking up.
“It’s so hard to bear – and I still feel so young. I feel there’s still so much life to live”.
Perera said her “practical brain” said she had to accept the diagnosis – but that it was difficult to do so, given her daughter is so young.
“I still want to make sure I provide for my daughter. I want to make sure she knows that she’s fully supported”.
Perera is now working on a project – to record a series of videos for Augustina; to be played on special occasions and certain birthdays.
“I’m probably going to do them for birthdays every second year.
“It depends on what I can get through as this latest round of chemo has really knocked me for six.”
'I want to make some nice memories with my daughter'
With continued chemotherapy, she has been told she will have up to three months to live.
If it goes well, she could have between six to 12 months left with her husband and daughter.
“If it gives me another day or a few more weeks to spend more time with my daughter – that’s worth it”.
Friends have set up a Givealittle page to help relieve some financial pressure off the family – and possibly to help fund one last trip.
“A quick trip somewhere with my daughter and husband would be great. I’m never going to get the chance to do that – that’s it for me”.
Perera paid tribute to her local community, for the support they had provided for their family in their time of need – including providing hot meals and offers to look after Augustina when they had hospital appointments.
She called on people to get regular checks and to trust whatever feeling they had that they may need to get something seen to by a doctor.
“If you feel something in your gut that something is wrong, go see your GP.
“If you’re not happy with it, get a second opinion. It could save your life.”
To donate to Sophia and her family, visit: Sophia Perera Givealittle
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