Fighting disease behind the mask

A school girl undergoing treatment for a disease which currently has no cure will share her story behind her mask at an upcoming fundraiser for Cure Kids.

Nine-year-old Saint Paul’s Catholic School student Sophia Binns was diagnosed with Crohn’s disease in January after a swathe of health issues.

The disease causes inflammation in one or multiple parts of the gastrointestinal tract, and while there is no current cure, its progression can be slowed with medication.

Her mother Rosa hopes that her daughter sharing her experience and participating in a question and answer segment at the Cure Kids Masquerade Ball in Blenheim on 29 June, will enable ballers to recognise the patients who would benefit from the fundraiser.

She says Sophia is heavily engaged with Nelson Hospital’s paediatric department and Christchurch-based gastroenterologist, Professor Andrew Day, for her treatment. Andrew is also spearheading a Cure Kids-funded project to gauge new ways to detect bowel inflammation through non-invasive testing.

It is anticipated to lead to significant advances in the Crohn’s disease approach and management in young people in New Zealand.

Rosa says she first noticed her daughter was showing signs of something more serious than travel sickness when she and her family were holidaying in the USA in September last year.

“She was getting sore tummies, she was low on energy, and we kind of put it down to travelling, and when we got back, she actually got Covid,” she says. “We were back and forth to the doctors with similar symptoms, as well as having had covid, and they couldn’t really pinpoint what was wrong with her.

“She lost a lot of weight, she had to give up a lot of her sports because she didn’t have the energy to do it, and she missed a lot of school.”

Rosa says, after finally getting an appointment with Nelson Paediatric Department at around Christmas time, tests revealed that Sophia had high inflammation levels in her bowel, which instigated a referral to Andrew.

“We went down to Christchurch to see him at the end of January, and she had a lot more investigative testing done, and he diagnosed her after that on the spot with Crohn’s disease,” she says.

“Since then, we’ve been heavily engaged with the paediatric department at Nelson Hospital, Andrew Day, and Sophia’s getting more specialised medication which is given over infusion at the hospital.

“She’s a lot better at the moment, she’s been able to attend school more, she’s taken up netball, and she’s been able to attend most games so far this season, which is more than we could have hoped for.”

Rosa says Andrew invited Sophia to attend the Cure Kids fundraiser as a special guest, to speak on stage about her journey.

“Hopefully, by Sophia attending, it helps people to see real-life children who are going to benefit from the funding that they’re going to raise [at the ball],” she says.

“It’s a no-brainer to support Cure Kids, because at the end of the day, it supports research which is going to support Sophia.”

Tickets are available here.

Sign up to our newsletter to get the week's top stories from Nelson/Tasman delivered to your inbox each Friday morning