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Nadiya's Story

Nadiya Sussmilch Story Nadiya was born 19 February 1998. She lived a completely normal life achieving all the normal milestones in life such as walking, talking and learning to interact with others as we all do in our early development years.

All that changed one afternoon in December 2001 when she was almost 4 years old. Nadiya was in the middle of doing craft and complained that she felt sick and then became very agitated, she vomited and Pania thought it was because she had eaten a lot of cheese earlier on.

Nadiya said she wanted to sleep. Due to past nursing experience, a friend Kay, recognised that Nadiya was not able to respond, which indicated a coma. Nadiya was taken to the Christchurch public hospital via ambulance and underwent emergency brain surgery to reduce pressure on her brain. From that day Nadiya and her family’s lives would never be the same.

Her parents, Paul & Pania, were informed that the biopsy from the first operation was a rare brain tumour, (Anaplastic Oligdendro Gligoma), only seen in very few children throughout the world. Nadiya was slowly lifted from the coma, when it was discovered she was paralysed down her left side and unable to use her left hand and leg. She immediately began rehabilitation, a course of radiation treatment, and then a year of chemotherapy. Throughout that time she learnt to walk and use her left arm and hand again.

Throughout Nadiya’s life, a story has emerged of a beautiful brave girl who showed great strength and determination to live, not just to be alive, but to enjoy every moment of her life.

She was always going to have her turn regardless of illness and disability. Her family watched her play on a playground one day and noticed that she would climb to the top of the slide, slowly but surely making her way to the top as the other kids would pass her numerous times and have a slide ahead of her.

That never bothered Nadiya as she was having her turn. She slid down the slide and laughed, smiling all the way, it never bothered her that she would get one slide to everyone else’s 3 or 4. She was having her turn.

Nadiya was regularly scanned by MRI to monitor the residual tumour to see if it was growing. Thankfully the tumour stopped growing and after 3 years Nadiya was living as close to normal life as possible. She learned to walk so that she didn’t need the use of a wheelchair and she was back to using her left hand albeit limited. She regularly went away with Camp Quality and camps for children with cancer. Everyday after she woke up, she would say "what are we doing today?"

In September 2006 Nadiya was scanned at the RCH Melbourne as a check up, and the family were informed that she had developed a new tumour close to the old site and it would require surgery. She underwent another operation and hospitalisation for a further 2 weeks which again left her unable to walk and use her left hand. She again went through rehabilitation to regain use of the limbs. She was reliant on the use of a wheelchair and a brace for her left hand. She also received outpatient treatment from the Goulburn Valley Hospital.

The Oncologist explained that further Chemotherapy was not a viable option as they had already exhausted conventional chemo treatments, so it was decided to monitor her and see if a further tumour would present.

In early 2007 a scan revealed yet another tumour requiring another operation with the same results. At this stage the oncologist, Dr Heath suggested Nadiya partake in a trial drug regime which involved five different drugs including Thalidomide. Paul and Pania were just grateful that there was a trial available otherwise there was no other option.

During the course of treatment, Nadiya went through the normal side effects of Chemotherapy (nausea, weight loss, hair loss, fatigue, etc). Unfortunately Nadiya developed another tumour and it was agreed the treatment was not effective in her case. Her Surgeon, Mr. Patrick Lo, explained that any further operation to remove the tumour would result in Nadiya not being able to talk or eat effectively and that her quality of life would be severely reduced.

The doctor mentioned that there was a limited amount of time as the cancer was obviously well spread and aggressive, which would be mostly consumed by rehabilitation, so after much consideration it was decided that she would not go through another operation as it was, in her parents eye’s, too much for her without a cure for the cancer.

This is one of the most painful, emotional and hardest decisions Paul and Pania had to make ever.

In February 2009 Paul and Pania learned that Nadiya had three-six months left. Apart from the bad news they had to tackle issues involving palliative care, pain relief and other decisions that reluctantly had to be made. It was an emotionally intense time which seemed totally unfair and unreal.

Nadiya went downhill in those first couple of months then became a little active again, eating at her favourite cafe doing puzzles, and playing with friends and Jacob. She pushed herself some days just to get out of the house rather than stay at home. Over the coming months Nadiya became bed ridden with numerous associated side effects to the drug regime. During this time Nadiya showed extreme courage, often amazing everyone. She knew she was dying and she wasn’t scared. She felt she was too young to die.

On the morning of 22 September 2009, Nadiya went into a coma and passed away the following day at 7:05 am with Paul and Pania at her side. At this time Jacob was enjoying a camp organized by Challenge and unfortunately was called home to the news of his sister’s passing.

She and Jacob would often sneak away to the adjacent park, then Jacob would panic, run home and tell his mum Nadiya was climbing to high on the play equipment, or was stuck on the ‘fireman’s pole’! Times like these just meant Nadiya wanted to play independently and have a turn just like any other child.

Having a turn for Nadiya also meant that she spoke up to give her opinion or share a thought well beyond her years. Illness didn’t deter Nadiya or slow her down; it showed everyone who had the privilege to know her that no matter how short a life can be, you have to give it your best shot with what you’ve got.

For a girl who had to learn to walk 3 times, she went abseiling, entered a 10km walkathon, rode on roller coasters, flying foxes and swam, she showed amazing courage, and this showed how much she really enjoyed life and embraced all the thrills it had to offer.

In Nadiya’s wakeful moments she entertained the family by telling jokes, sharing thoughts and memories and telling them that she loved them.

Nadiya fought every step of the way without complaint, always more concerned with everyone else’s well-being above her own. She said "I’m not scared of dying, I’m just too young" and "you’re gonna miss me and I’m gonna miss you".

Nadiya will be remembered as a brave girl who was always going to have her turn to create, play, sing, dance and joke. Her strength came from her heart and mind.