Phoebe’s fight
At five years old, Horsham’s Phoebe Parish endures pain and weakness daily to go to school, train in gymnastics and play with her three siblings and puppy.
In July 2021, Phoebe broke her arm and more than 12 months later was diagnosed with juvenile linear scleroderma.
Her mum, Brooke Parish, said the condition caused significant muscle wastage and ligament and joint pain due to increased levels of collagen.
“It is already a rare condition and Phoebe has an incredibly aggressive case of it,” she said.
“It usually impacts one area of the body, however, Phoebe has it on her legs, one arm, stomach and possibly her back.”
Ms Parish said while a typical case of juvenile linear scleroderma meant hardening of the skin, Phoebe had deep lesions.
“After her arm healed, I noticed what looked like a scar the size of a 10-cent piece on her arm. One month later it had doubled and another spot appeared on her bicep,” she said.
“I took her to a doctor and we were referred to the Royal Children’s Hospital in Melbourne as a category four patient, which meant a 12-month waitlist.
“I knew in my stomach that we couldn’t wait that long, so I took her to a skin clinic in Horsham and she was reviewed and booked in with a paediatric doctor in Melbourne immediately. That was in December 2021.
“She saw the paediatric doctor and was initially diagnosed with something else before she went back for a check-up three months later, which was when she was referred to rheumatology at the children’s hospital.
“She was diagnosed and two weeks later, had her first dose of methylprednisolone.”
Twice daily Phoebe takes the maximum dose of mycophenolate for her weight, a daily dose of prednisolone and every four weeks has a methylprednisolone infusion.
Her doctors are in the process of changing Phoebe’s medication to tocilizumab infusions, every two weeks for eight weeks and then every four weeks after that.
The doctors are also requesting permission for the infusions to be fortnightly injections instead, after some time. The injections would cost $1000 a dose. The second option the doctors are considering is adding methotrexate to the current regime of methylprednisolone doses.
Ongoing
Ms Parish said if her connective tissue was impacted, which was highly possible, Phoebe would need a wheelchair.
“She has constantly sore hips and legs, but she is so resilient and doesn’t let it stop her from doing anything,” she said.
“Her gymnastics helps her keep strength in the muscles she has.
“She has a team of physiotherapists and we are looking at starting occupational therapy as it is starting to affect her hands and ability to hold a pencil to write.
“We have to make sure her program is endurance based because making the muscles too fatigued encourages the muscles to deteriorate.
“Phoebe has a very high pain threshold and she is so strong, so when she does complain, we know it’s something significant.
“She does miss a little bit of school for appointments and because when she gets sick, she gets very sick.”
Ms Parish said neither treatment option was a ‘perfect’ solution.
“She is put at a high risk for infectious diseases and the medication affects her digestion, so she could either end up in the hospital for the common cold or she’s in agony every day,” she said.
“On top of her medication, she takes painkillers every day, adult doses of
laxatives and daily antibiotics. It’s an incurable condition, so she will have a life-long battle ahead.
“Usually, it takes about five years from the first appearance to be impacted how Phoebe is now – but it
took her eight months.” To help support the Parish family a friend has organised a Gofundme account, and Ms Parish’s mum, Sandy Wills, is organising a fundraising cabaret night in July.
Horsham band ‘Headrush’ and DJ Darren Watson have donated their time for the event and businesses have donated goods for raffles and offered to promote the event.
Ms Parish said her mum and friends had put in a lot of effort to support Phoebe so that her medication and costs of travelling to and from Melbourne could be partially subsidised.
The cabaret is at Maydale Pavillion in Horsham on July 15 and tickets can be purchased via trybooking.com/events/landing/ 1060189
A Gofundme page is available via gofundme.com/f/beautifulphoebe-needs-our-help
Ms Parish said it was a stressful time for the family.
“It’s hard, as a parent, feeling so helpless and knowing that no matter what choice we make or what treatment plan we have, we have to sit and watch her suffer,” she said.
“It’s quite difficult knowing there’s nothing you can do to take pain away while trying to make her feel as normal as possible.
“She has three siblings – Ruby, Immi and Connor – who are healthy and we try to not let her compare herself to them.
“She inspires me with her strength and she gives me strength most of the time.”
Ms Parish said she was worried about the spread of Phoebe’s condition, with new spots appearing on her stomach and back.
“It doesn’t seem to stop, so we are hoping this next treatment plan will do something to halt it,” she said.
“Phoebe will be on medication for life, but in most cases the condition runs in five-year cycles of coming and going.
“It puts her at risk of juvenile rheumatoid arthritis, but at this stage, we are just doing what we can to keep her out of a wheelchair.
“It’s one thing after another and one fix seems to add another problem.
“She’s been on a journey already and we are there with her, but we are only at the very beginning.”