Dialog Box

Children's Tumour Foundation

Emily's Story

At five years old Emily began having mild absence seizures – a “mild” epilepsy – and PET scans revealed two 1.5cm lesions deep within her frontal lobe. Throughout all this one thing had remained the same – Emily is never seen without a smile on her face.

Emily is an amazing and beautiful young girl. She is such a gift. She welcomes everyone with a great big smile, and picks me up when I’m feeling low. I’m so blessed to be her father."

Peter

Emily's Dad

For Emily’s parents, Peter and Sharon, one of the most important things for them was ensuring Emily had the same opportunities as other children. At a young age Emily had limited mobility due to the pseudoarthrosis and was dependent on walking aids. Emily was unable to do usual activities like running, climbing and dancing with her younger friends and sisters. 

At 6 years of age, a decision was made to have her lower right leg amputated in September 2013 due to the fragility of her tibia, which was preventing her from weight bearing. 

After the surgery Emily had surpassed everyone’s expectations with her courage and positivity. Emily soon took her first independent steps with a newly fitted prosthetic limb at Christmas 2013, just a short three months after her operation. Emily’s newfound mobility and transformation was simply amazing, it had relieved Emily and her family from a heavy weight.

Now in 2020, Emily, now 13 years old, has entered high school, and has still not experienced any more seizures since her diagnosed epilepsy is being successfully managed.  Emily’s two brain tumours are monitored annually, and they remain unchanged throughout the years. 

“Emily has come such a long way in such a short time. We are all so proud of Emily for the hurdles she has already overcome.  She has always been positive and kind towards others.

There is still such a long road ahead, but we all try to remain positive,” says Peter. “It is with groups like the CTF, NF Camps, Undie Run, and the CTF Facebook community that we are able to have a greater perspective, understanding, and can now provide support for families who also live with neurofibromatosis every day.

The Children's Tumour Foundation provides us with useful NF community support and relevant information for Emily's condition.

The Cupids Undie Run has been a fun activity for our family to be involved in and it has helped provide the support, awareness, research and education of neurofibromatosis that is so important to our family, and to Emily’s future. 

We hope this update helps inspire and provides some hope for those who may have recently been diagnosed with this unfamiliar and daunting condition.” 

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