Little miracle fights on against the odds
SOPHIE Nance is just like any other pre-teen, but her journey to reach high school has been a fight every step of the way.
The 12-year-old Springfield Lakes girl is due to join her twin brother, Matthew, next year for their first year at Springfield Central High School, which is a great achievement when you consider her diagnosis of Maroteaux-Lamy Syndrome 11 years ago meant she almost didn’t make it past the age of two.
Despite the odds, Sophie has gone on to thrive and said she’s looking forward to starting the next chapter of her life.
“The hardest thing living with this condition is that you get really sore, so you struggle with some things like running or when you deteriorate, you have to do less,” Sophie said.
“I wouldn’t call it good, but you just learn to live with it and the cool thing is that I get to use technology which other people don’t.
“I’m really looking forward to the transition classes at high school and also meeting my new teachers.”
Sophie was just 16 months old when she was diagnosed with the rare disease, in which sufferers lack the enzyme responsible for breaking down waste products in the body.
She was only the fourth person in Queensland to be diagnosed with the disease, with treatment at the time not funded by the government.
Mum Mandy said through community support and local politicians, the family was able to lobby the government to fund the treatment and ultimately, save her little girl’s life.
“Sophie needed enzyme replacement therapy which was only available under a trial that she wasn’t eligible for,” Mrs Nance said.
“Our local GP got in touch with Westside Community Care director Pastor Phil Cutcliffe who put us in contact with our local State Member, Jo-Ann Miller who was eventually able to get the State Government to pay for Sophie’s treatment.
“This was later approved for federal funding under the Pharmaceutical Benefits Scheme and the funds that were raised through the media campaign went towards specialised equipment for Sophie.
“We are so very grateful
Her treatment now costs about one million dollars per year. — Mandy Nance
for all of this funding because with her current weight, her treatment now costs about one million dollars per year.”
Pastor Phil Cutcliffe said it was amazing to see Sophie starting high school and was particularly impacted by her story.
“I remember finding Sophie's story touching to me as I am a twin and I tried to think if it was my own twin sister going through that life challenge, I would have really wanted someone to step in and help,” Ps Cutcliffe said.
“It just looked impossible to have to raise $200,000 a year and I think I remember Mandy saying she had written to the then Health Minister and hadn't received any response, so I knew Jo-Ann Miller and thought I would ask her to investigate.
“I was over the moon when just a short time later Jo-Ann reported back that the Health Minister had agreed to fund the costs until the Federal Government changed their mind and made the funding available for Sophie.
“It just goes to show any one person in the community can make a difference if they reach out and help someone.”
Shortly after Sophie’s diagnosis Sophie featured on the front page of the Queensland Times which saw an outpouring of help towards her cause. Since then Sophie has undergone numerous operations and continues to receive Enzyme Replacement Therapy on a weekly basis.
FAMILY SUPPORT: Sophie Nance with her mum Mandy and twin brother Matthew. Sophie suffers Maroteaux-Lamy Syndrome.