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Sienna's Story

Sienna is two-years-old and was diagnosed with Neurofibromatosis Type 1 at just three weeks old.

Sienna has a plexiform Neurofibroma that has wrapped around her spinal cord, from the C2-C5 vertebrae in her neck and down to her chest.

Our family has been very fortunate, as Sienna was approved for a MEK inhibitor trial, which is currently the only treatment that has shown positive results in shrinking or stabilising NF related tumours.

The drug that Sienna receives is called Trametinib, and as you can see from the MRI images, this treatment has been a miracle and drastically shrunk her tumours within the first three months! Due to the placement of Sienna’s tumour and how it impacts her spinal cord, she cannot Sit, Stand, Crawl or walk by herself…but we are working tirelessly to get her to that point!

Due to her NF, Sienna also has a Global development delay and Sleep Apnea.

Sienna’s diagnosis of Neurofibromatosis and our journey so far, attempting to navigate the medical system and treatment options, has been a struggle.

We have constant trips to Melbourne for appointments at the Royal Children’s Hospital. We never know what to expect, and at times, these visits have turned in to 4 month hospital admissions and numerous meetings with specialists. We never know what to expect, or what life may hold for us.

Throughout all the surgeries, appointments and treatments, Sienna is the happiest little girl and her smile continues to lights up a room!

She’s very talkative too (over 100 words!) and you can tell her personality is definitely as a 2 year olds should be. She absolutely loves Peppa Pig and Baby Jake!

Whenever Sienna attempts to sit up you can see the determination in her and as her mum, I find that one of her strengths is her courage and resilience. She is not one to give up, just because something is difficult. NF is unpredictable and so we take each day as it comes.

However, if we had a choice, we wouldn’t change our experience for the world, because we love our gorgeous girl and are so proud of her.

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