Woman with Neurofibromatosis-1 NF1 had to relearn to walk after surgery on aggressive brain tumour

An Australian woman with tumors growing along her nerves had to learn to walk and talk again after the condition led to a rare brain cancer that left her in critical condition for months.

Emma Sinclair, of Forbes in NSW, was supposed to be in hospital for just 10 days to recover after having part of an aggressive tumor removed from her brain that resulted from her having a rare condition. known as neurofibromatosis or NF1.

Emma Sinclair (pictured) is battling an aggressive brain cancer due to the rare genetic condition she’s dubbed Neurofibromatosis-1, or NF1, which can cause tumors all over the body

The 34-year-old told FEMAIL she was “stubborn and determined” to get back on her feet and regain some independence after major brain surgery left her unable to walk, talk and use her dominant right hand .

At just three years old, Emma received her NF1 diagnosis, which has a range of symptoms including growing tumors in the brain, spinal cord, and nerves.

“(NF1) is when tumors grow on all your nerves and I’m lucky to be under it. They’re all on the inside, so you can’t really tell I have it by looking at me,” she explained.

She said the NF1 didn’t affect her too much in her early childhood and teenage years, but she had some learning difficulties and was never good at sports because of her “low muscle tone.”

Emma had her first of what would be 13 surgeries to remove a tumor when she was in year 11. She would undergo another 12 surgeries.

In 2020, doctors told her they had found a unique cancer in her brain that has two parts, one stage one and the other stage three, but she didn’t have much time to digest the life-changing news. .

“I didn’t have much time to get used to it. I found out and had surgery the next day,’ Emma said.

Emma underwent surgery to remove a brain tumor in 2020 and had to learn to walk and talk in intensive care after more than 90 days of recovery from the surgery

Surgeons were able to remove the first part, but could not remove the more aggressive part.

Emma would recover from the major surgery in just over a week, but was hospitalized for 106 days, losing the ability to walk, talk and use her right hand.

“I was lucky enough not to remember much of that time,” Emma said.

“I had a lot of infections in the brain and stomach, then I had to have a shunt put in the brain, although we tried to avoid it.”

Emma received her NF1 diagnosis when she was three years old. She said it didn’t affect her much in her youth, but she had her first surgery of 13 to remove a tumor when she was 16

The shunt, a tube that has to be surgically inserted to help drain fluid from the brain, didn’t work properly and Emma had to have a second insertion.

“A lot of things went wrong. My surgeon didn’t know what caused it. It caused him a lot of stress,” she said.

After more than 90 days in ICU, Emma was transferred to a rehabilitation center where she began to learn to walk and talk again and was finally allowed to go home.

“I have so much respect for kids now because gosh it’s hard,” she laughed.

Emma was given a walker that she would have to use for the rest of her life.

‘I didn’t like it at first. You don’t see young people using them, you just see a lot of older people using them, but I was stubborn and determined, stubborn most of the time,” she said.

‘Every day I did small walks. It was only at the end of the street which was less than 100 meters, but I was determined to get past it and now I can walk more than a kilometer in one go.’

Despite being back on her feet, Emma’s ordeal was far from over.

Emma was ‘determined and stubborn’ enough to learn to walk again with her frame, but now has to start radiation to slow the growth of the tumor that doctors couldn’t remove

Because surgeons were unable to remove the aggressive part of her brain tumor, she underwent 12 months of chemotherapy to slow its growth, during which she completed her teacher training.

Emma was only one block into the course when she was diagnosed with brain cancer and, though she knew she could never work as a teacher, she wanted to graduate.

My focus isn’t very good anymore. It was never brilliant and it got worse after the brain surgery, but I was determined to finish it,” she said.

After Emma completed both her studies and years of chemotherapy, she was dealt another blow – the tumor did not respond to treatment and had doubled in size.

Emma may have to miss her graduation, but remains optimistic and refuses to let her illness “define” herself – a trait she attributes to her mother (pictured, right, with her best friend, Lane)

She now travels an hour and a half to and from a hospital in Orange to receive radiation, which she will have to do five days a week until Christmas.

Emma is disappointed that she was not able to put her walking skills to the test at the Children’s Tumor Foundation Conquer NF in color fun run that aims to raise vital funds to support those affected by the rare condition.

She may also have to miss her university degree, but remains optimistic and refuses to let her illness “define” herself – a trait she attributes to her mother.

“She never lets her get in the way either, so we never did. NF1 was never an excuse,’ Emma said.

“It was always ‘you could have this, but you can still do all these things’ and I think I took that on.”

To donate to the Children’s Tumor Foundation and support those living with neurofibromatosis, click here.