Big sacrifices for treatment
Hannah-Rose Thompson-Berryman was diagnosed 24 weeks in utero with arthrogryposis — resulting in hyper-extended legs, hip dysplasia and double clubfoot at birth.
Her parents, Renee Thompson and Daniel Berryman, said specialists had told them their daughter's condition was complex and meant she would be confined to a wheelchair for life.
Doctors had advised of the option to abort the foetus, but Ms Thompson said they "ruled that out straight away" after she felt a "big kick".
There was not a lot known about arthrogryposis in New Zealand and they were "terrified" about the uncertainties regarding Hannah-Rose's care.
Mr Berryman said they were "100% confident" the overseas specialist they planned to see, an orthopaedic surgeon based in Iowa, was "the best man for the job for her".
"At the end of the day, we want what's best for her and what's going to help her.
"We're trying to sell as much stuff as we can to make this possible . . . we're selling assets, we're selling a boat, and we're looking at selling vehicles."
The pair had been based in Te Anau, making trips to Christchurch Hospital for scans, but moved back to Dunedin before their daughter was born to be closer to a hospital and for the emotional support from their extended family.
The move cost Mr Berryman his job.
While the doctors had been supportive, they were inexperienced with the condition, Ms Thompson said.
"There's never really been any answers apart from 'she's complex' and 'we don't really know a lot'.
"It was a really tough time for us as a family.
"As a mother, you really want the best for your child, and having a condition like this, it was quite traumatising.
"Even just for Dan, there was no support for the father involved, which was devastating.
"We felt really alone in this."
Early intervention would give Hannah-Rose the best possible outcome in life, she said.
"We were told that she would never move her legs and be confined to a wheelchair for her whole life.
"In America, there's a lot more research and professional care over there."
A Givealittle page was set up this week to raise funds for flights, appointments, accommodation and other costs.
They hoped to stay in Iowa for a maximum of three months, along with their other children.
The remaining money they received would be donated to The Arthrogryposis Group New Zealand.
tim.scott@odt.co.nz
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