Kilkenny teacher Natasha Smith shares her story as part of Brain Tumour Awareness Week

It was Natasha Smith’s sister, Naomi, who first noticed something wasn’t quite right with their mother, Ronnie Fehily.

She seemed to be experiencing difficulty with her memory. Natasha, a teacher at Presentation Kilkenny, says her mum was as fit as a fiddle, and what came next was a total shock.

“We went to A&E and, following a biopsy, mum was diagnosed with a grade 4 glioblastoma, the most common type of brain tumour. It was such a huge shock for us,” she says.

“She was always such an active person – she had been working away in her job as a pharmacist at the time, and she had also continued to play hockey in the year prior.

Ronnie was diagnosed with a grade four glioblastoma in September 2011. She was 62 at the time

The late Ronnie Fehily

“Mum would undergo chemotherapy and radiation treatment but, unfortunately, she would pass away within a very short time, in January 2012.

“Mum was the life and soul of our family, and the glue that held us all together. She organised all of our family get-togethers and made sure we had everything that we needed.

“We were so glad that we got to enjoy that last Christmas with her. Mum loved Christmas and especially the build-up. You would go to bed on Christmas Eve to the noise of the food mixer going for the third or fourth week, mixing and preparing everybody’s favourite dishes!”

According to Natasha, Ronnie was always so positive and focused on helping others.

“Mum loved animals and the outdoors and meeting people. Above all else, she believed in kindness and being inclusive and not leaving anyone out. She also tried to get us to find the glimmers of hope in life. If things were tough, or you had a bad day, she encouraged us to look for the little positives there too. She told us that she loved us every day.”

Natasha says that while the support and love shown by family and friends were just incredible throughout her mother’s very short illness, and beyond, there was very little formal information or support available.

“We went everywhere looking for help. We googled, which I don’t recommend. We spoke to nurses, doctors, GPs, and online support groups. We met people who have travelled abroad for support and treatment,” she says.

“We found it difficult to find information and that is why we wanted to help others find it easier and have more time to spend with their loved ones.

So, as a family , they decided to establish a network of support. They met with the rest of the family – aunts, uncle, and cousins — did research, travelling to groups and charities in Northern Ireland, the UK, and the USA. They met professionals in Beaumont, Crumlin and Temple Street.

“We met with some amazing people who had brain tumours or who had lost someone to a brain tumour,” she says

“We built Brain Tumour Ireland – the Ronnie Fehily Foundation from the ground up, to help provide services for families of those diagnosed with a tumour, to advocate on their behalf, and to promote research into these aggressive tumours. The patient voice is always central to everything Brain Tumour Ireland does.”

When it comes to supporting the brain tumour community, Natasha is keen to acknowledge that everyone’s experience is different:

“Building a community with knowledge and a culture of support is of utmost importance. Listening to people on the ground who are living this experience is crucial. Everybody’s experience is unique and their challenges are different and that needs to be acknowledged.”

In recent years, the charity has worked with Temple Street to include children who suffer from the illness. It makes a huge difference to them.

The charity is not State-funded so it relies on people doing their best, helping out with fundraising and supporting iniatives.
Natasha says they have had huge support right across Ireland, including here in Kilkenny.

The Brain Tumour Awareness Week takes place at the end of October and a number of events are taking place.

For all the latest information on activities taking place as part of International Brain Tumour Awareness Week, visit braintumourireland.com or follow on social media: Facebook @braintumourireland; Instagram @brain_tumour_ireland; and Twitter @braintumourirl.

Natasha is a board member of Brain Tumour Ireland.