She knew it wouldn't be easy, but she knew it would be worth it
14-year-old Zenilda’s scoliosis surgery has been successful!
When you live with pain, really know it every day, for years on end, to live without it seems like an unbelievable miracle. Imagine young Zenilda’s excitement, her joy, at being able to live pain free. To stand tall. To see a future of her own making. To do the things most children her age do every day without a second thought after years of excruciating pain.
Zenilda’s scoliosis was so bad that it started to crush her from the inside out, putting pressure on her heart and lungs. Without appropriate surgery, Zenilda’s scoliosis would have eventually taken her life.
You might remember Zenilda was born in Timor Leste. Her family first noticed an issue when she was just six-years old, and as Zenilda grew, things only got worse for her. In 2020, she was forced to stop attending school because it was too painful for her to sit, read, or even write for any length of time.
The type of surgery required to treat Zenilda’s scoliosis is not available yet in Timor Leste.
Zenilda talked about what she was going through at that time...
'About one year ago, I stopped going to school. I feel not happy because I can’t go to school and can’t do activities that I want to, like helping my mother. It’s difficult because even when I just put my head down, I feel bad pain. I hope after the surgery, I can have a normal life like other people. I want to get better so that I can go back to school. My favourite thing to study is mathematics and not my favourite is natural science. If I could continue my study, I would like to study education because I want to be a teacher like my mother.'
Her goals were clear when she arrived in Australia for treatment at the end of 2021.
'When I learnt I was coming to Australia, I felt excited and afraid too. I watched on YouTube about spinal surgery, and it was very complicated. But I know as long as I suffer from this disease, I will feel not happy. So, I will be brave.'
Since she first arriving on our shores, Zenilda has braved her way through so much. But Zenilda is as resilient as she is brave. COVID and her original treatment hospital changing its priorities resulted in lengthy, unexpected delays.
As you can imagine, this was hugely disappointing and stressful for Zenilda and her family.
We were thrilled that the Sydney Children's Hospital, Randwick, came on board last year as a partner in Zenilda’s surgical journey. But this excitement was short-lived as a routine pre-surgery scan that turned up a new hurdle in her journey -
A tumour on her spine.
She had been through so much already. This really felt unfair.
However, the tumour was successfully removed, and following surgery we found out that, thankfully, the tumour was benign. What a relief!
Zenilda then had to regain her strength before she could start her scoliosis treatment.
A real ‘doer,’ Zenilda busied herself with craft, art, fishing, cooking, and visits to her beloved Kmart (possibly Zenilda’s favourite place on earth) until we had a date for her scoliosis surgery.
Finally, she was ready for the life-changing spinal surgeries!
At Sydney Children's Hospital, Randwick, a complex series of procedures over several months involved Zenilda being fitted with a halo brace to lengthen her spine, fusions and a final surgery for a supporting rod to give her the best outcome for her future life back in Timor.
She's been bravely recovering with support from her aunty and Children First volunteers.
It was touch and go for the last year. We are now thrilled we can report that the surgery was fully successful!
Thanks to everyone involved, from esteemed surgeon Dr Samya Lakis to hospital staff, to Sydney Children's Hospital, Randwick for jumping in when Zenilda needed it most and seeing her through regardless of the challenges, to the Scobie and Claire Mackinnon Trust for helping bring Zenilda to Australia in the first place, to the numerous Children First volunteers and to kind and wonderful people, like you, who never gave up and supported Zenilda all the way. Every day is a feel-good day for Zenilda now!
You should feel good too – strike that – you should feel FANTASTIC about helping save Zenilda’s life and helping create a fabulous future.
Thank you for your support! Thank you for helping to save her life!
