Romsey’s Katie Alford is a happy 10-year-old who loves running, riding horses and spending time with her family. But when Katie was almost three years old she had an accident at a park and was taken to hospital, where her parents Alison and Chris Alford were not prepared to hear from doctors that their daughter had neuroﬁ bromatosis (NF) type one.
The illness is not well known, but affects up to one in 2500 individuals and is considered to be as common as cystic ﬁ brosis, muscular dystrophy and Huntington’s disease. The genetic illness sees tumours grow on nerves throughout the brain and body, which can cause a range of problems for sufferers such as loss of vision, heart defects, brain tumours and learning and attention deﬁcits.
Currently there is no cure for NF and treatment is focused on early detection. For Katie and her family it is a matter of monitoring her health and taking her to doctors for regular check-ups. Recently a tumour was removed from Katie’s right arm but it is likely that it is not the only one waiting for doctors to discover.
“She has tumours all through her body that we don’t know about,” Alison said.
“Early detection is a big thing just so they can develop an action plan.
“It’s just about beating the growth.”
Despite this Katie has fully embraced her life with NF.
“I feel that I am more special and unique,” she said. “I tell (people) that it’s just part of me.” Katie has met other children with NF and believes there is not enough awareness about the disease.
“They are worse than I am,” she said.
“I feel sad for them and I feel lucky that I’m not as bad as them.” Alison said when Katie was ﬁrst diagnosed with NF they had not heard of the illness and it was a shock for the family.
“It’s a bit of a battle; thankfully we run our own business so Katie comes ﬁrst,” she said. “She’s quite small so her growth has been affected.
“We were told she would never ride a bike but she rides a pony.”
Riding is something Katie absolutely loves and because her parents own Victoria’s Alford Racing Stables she is very aware of horses and the harness racing industry for someone so young.
One race horse in particular named Stormed Out caught Katie’s attention, and although he was sent to Shepparton’s Julie Duffy to be re-trained and rehomed Katie continued to love him.
Julie plays a key role in helping retrain and re-home ex-race-industry horses as a Harness Racing Victoria Harness Education and Re-homing Opportunities (HRV HERO) re-trainer.
Some of the horses Julie re-trains may have raced and some may not have quite made the cut.
“I pride myself on matching horse to home,” she said.
“I always match them to the right home.”
Before becoming a HRV HERO, Julie was already re-training horses and selling them on to new owners who would love and care for them.
She believes she has sold about 1000 horses and said there was a huge demand for ex-race-industry horses. When Julie met the Alford family she was thrilled to see how much Katie loved Stormed Out and cared for his wellbeing.
“He’s a pretty special horse to everybody,” Julie said.
This got her thinking about how she could help make Katie feel better about Stormed Out being sold to a new family. Knowing Katie had NF and loved riding horses, Julie decided to hold a Mega Hero March to Conquer NF starting at Moora Racecourse and Recreation Reserve.
The Mega Hero March to Conquer NF was inspired by similar walks created by the Children’s Tumour Foundation of Australia to raise money and awareness about NF.
Children’s Tumour Foundation of Australia national support co-ordinator Sally Maspero said this was the ﬁrst year the walk had expanded out to include all of Australia, and many groups and people like Julie had been organising their own versions of it with the goal of raising money for the organisation.
Currently the majority of funding the organisation receives comes from people and groups but their generous support has helped fund NF clinics, research into children with learning problems associated with NF type one, a specialist medical training program focused on NF in Melbourne and many other initiatives.
“We do a lot with the money that comes in and we encourage people to support us,” Sally said.
For Julie, organising a charity event such as this is a ﬁrst. She said Stormed Out had become her charity horse and would eventually be sold, with the money from the sale going to the Children’s Tumour Foundation of Australia.
So far Julie has raised nearly $2500 for NF and is hopeful the Mega Hero March at Moora will attract more funds.
“There has been a huge amount of interest,” she said.
“I think it’s kind of humbled me a little bit because I didn’t expect so many people to sponsor it.”
Although Julie’s Mega Hero March is more of a trail ride than a march, she said anybody was welcome to attend and they could ride a horse, a bike or just walk.
For Alison, her daughter’s journey with NF has taught her much about people’s generosity. “I’m lost for words on how kind it is of Julie to be organising this,” she said.
“We can’t ﬁnd a cure if we don’t have the money.”
Katie also loves the idea of getting to ride her pony during the Mega Hero March at Moora.
“I want to thank Julie,” she said.
“I think it’s a good idea so we can help raise money for NF and have some fun.”