Emily

Emily was diagnosed with NF at 10 months old after x-rays revealed a pseudoarthrosis in her right tibia which was causing her leg to develop brittle bone and curve, affecting her ability to walk. Emily has undergone many surgeries since, including operations to brace and pin and, eventually, amputate her right leg.

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 has remained the same – Emily is never seen without a smile on her face.

“She is amazing and beautiful. She is such a gift,” says Peter, Emily’s dad. “She welcomes everyone with a great big smile, and picks me up when I’m down. I’m so blessed to be her father.”

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. Limited in mobility and dependent on walking aids, unable to do activities like running and dancing with her younger sister, Sophie, were just a few of the challenges Emily was facing.

Looking to open a world of opportunities for Emily, Peter and Sharon decided to have their daughter’s lower right leg amputated in September 2013, and they haven’t looked back.

Emily surpassed everyone’s expectations with her courage and positivity after the surgery as she took her first independent steps at Christmas, just three months after her operation.

“Sharon and I keep stopping to remind ourselves that Emily’s surgery was only September 2013,” says Peter. “Where once everywhere we went was with wheelchairs or walkers, now Emily puts her prosthetic leg on and away she goes – walking to and from school, riding bikes, playing at the beach, and swimming. Activities that were so challenging for Emily before are becoming easier and more frequent. Our family feels as if a large weight has been lifted, albeit temporarily.”

Now in 2015, Emily has not experienced more seizures since being managed. Her two brain tumours are monitored annually and they have remained 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. It is very difficult at times for us, and there is still such a long road ahead, but we all try to remain positive,” says Peter. “It is with groups like NFAA (now CTF), the NF Camps, and the CTF Facebook community that we are able to have a greater perspective, understanding and broader view of families who live with neurofibromatosis every day.”

Emily is now in year 2 at primary school, and although facing some learning challenges, she has a great deal of determination to overcome this adversity. She has also enrolled in martial arts as her preferred school sports activity! And on Anzac day 2015 Emily marched with her school without assistance.

“With everything Emily has already been through, her smile and happiness shines through. She is an inspiration to her friends, teachers, and her family…At just 8 years of age, Emily is a wise, beautiful, and happy little girl who is beginning to understand NF…”

“The children’s tumour foundation provides us with useful NF community support and relevant information for Emily’s condition…awareness and education of neurofibromatosis is so important to our family and we hope this update helps inspire and provides some hope for those whom may have recently been diagnosed with this unfamiliar and daunting condition.” Says Peter.


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