Canberra retired teacher, dad and grandfather Brian Shaw is a man who has put up with a lot in his life, as he coped with the genetic condition Neurofibromatosis (NF). Not that he would ever let on.
NF causes tumours to form on nerves in the body, including the brain and spine. Progressive and unpredictable, it can also cause cancer, blindness, deafness, as well as physical differences, learning difficulties and chronic pain. In Australia, it affects one in every 2500 people and on average every three days a child is born with NF. But awareness of the condition is still low.
Brian has Type 1 of the condition, which has manifested in tumours that affected his left eye. He's had multiple surgeries, including one that was to stop a growth in his eye socket which had spread into his brain cavity. He also has thousands of neurofibromas under his skin.
"For me, they're more niggling. I've got so many little ones, from pinhead-size up to about a thumb-nail size. There would be thousands. And I'm fairly mildly affected, which is the thing I'm really grateful about," he said.
"NF has three major forms and each affect people differently. There is such a wide variation in the effects, even within a group. I have NF1 and am mildly affected. I've seen kids with NF1 who've had their legs amputated and serious tumours elsewhere."
Brian, 63, recently retired as head of computing at Marist College, has been a teacher for 41 years. He believes the Neurofibromatosis affected his early schooling. "I look back and can see I had some learning difficulties back then," he said.
But his lifelong attitude has been to never give up. So, he worked hard and made sure he became a teacher.
Brian and his wife Sandra, who live in Ngunnawal, have three children - Emily, David and Katy. Emily also inherited Neurofibromatosis.
"She was our first and we knew there was a 50 per cent chance any of our kids could have it," he said. "So we were looking at some of the signs which include what they call cafe-au-lait spots on the skin, like birthmarks. And she did have those."
Emily, 34, now lives in Crookwell and is married to Chris Wilson, a teacher and farmer. They have two children, Camac, three, and Rosaleigh, six months.
She said her dad had always been "very loving and supportive".
"And just always there for us," she said.
Emily, an admin officer, said she did feel a special bond with her dad because they had the same condition.
"Yeah, absolutely," she said. "He always supported me with the things I had to do with it.
"My condition is nowhere near like my father's. But he's always been there through the tough times and tried to explain everything and know what I need to do to manage the condition."
Emily has a tumour on the back of her right knee, which required an operation, and nodules elsewhere.
"It thankfully doesn't really affect me that much," she said. "I had to avoid rough sports, which I'm not into anyway."
She and Chris are monitoring their own children for any sign they have inherited the condition, but so far things are looking good.
"Developmentally they've both been fine," Emily said.
"If there were any concerns, we'd definitely go and get a blood test."
One of the inspiring things about Brian is his desire to help others with Neurofibromatosis, including the Children's Tumour Foundation.
As the peak body supporting people living with NF in Australia, the foundation uses September to promote the condition and urge people to show their bravery by joining the NF Hero Challenge.
The idea is to attempt something that takes you out of your comfort zone, that challenges you mentally or physically, while raising funds for the foundation. It could be walking 10,000 steps a day, giving up coffee or sugar for the month or shaving and dying your hair.
Brian helped to organise the local Cupid's Undie Run for the foundation. The idea is to feel some of the discomfort that people with NF live with day in and day out - and to help them find a way out.
"I really believe the CTF is a really top organisation and the work they do and the funds that they provide are essential in trying to find, if not a cure, a reason behind the symptoms and the ways in which they can be best handled and families supported," he said.
Father's Day on Sunday for Brian will involve a lot of Zoom calls to his children and grandchildren and, Covid restrictions willing, a visit from daughter Katy who is a Year 5 teacher at Jerrabomberra Primary but who lives in Canberra.
"Now that restrictions have eased a little bit, we might be able to have a picnic on our front lawn," he said.
Brian's attitude to being a dad reflects his general philosophy to life.
"I'm a normal dad. We deal with whatever comes our way and we don't give up. I think that's a reasonable thing because you don't want to stop living your life," he said.
- Sign up for the NF Hero Challenge for free here
