She was diagnosed with the condition when she was two, and has been travelling from Rolleston to the Gold Coast Centre of Movement for three weeks of physical therapy every six months.
Each trip costs $10,000 for the treatment, plus another $10,000 to $15,000 in travel expenses.
Her parents, Kendal and Alan, need to constantly fundraise to keep the treatment going.
They have used a Givealittle page and raffles to raise the funds, and fill in any gaps themselves.
The latest fundraiser is a bingo night on July 26 at the Tai Tapu Hotel.
The doors open at 6.15pm and bingo starts from 7.30pm. Tickets are $45 and include a bingo ticket and nibbles. To buy a ticket go to https://shorturl.at/27V3W
Kendal said they first noticed something might not be right when Biffie was about 13-months-old.
“She never crawled, but she bum-shuffled,” Kendal said.
When she was two, they took her to a doctor as she kept doing repetitive hand motions.
“We were just hunting why someone her age could say mum, dad, dog, but Biffie couldn't.”
“We were scratching our heads,” Kendal said.
Biffie was diagnosed with the rare syndrome, which affects about one in 10,000 baby girls, in July last year.
Kendal said knowing what was wrong “was a relief, but it was scary at the same time”.
After the first three weeks of treatment on the Gold Coast, Biffie could support the weight of her own body.
“It was just amazing in that short timeframe, they could do so much,” Kendal said.
Between the therapy sessions, the family does what they can to keep Biffie progressing.
“We have our ups and downs. But we take each day at a time.”
A Centre of Movement facility is planned to open in Christchurch later this year which will ease the burden of travel costs to the Gold Coast.
