The Brighton couple have started to raise $40,000 to pay for experimental umbilical cord stem-cell therapy for Daryl-Ann, who has cerebral palsy.
‘‘Daryl-Ann will never be symptomfree,'' Ms Bolton said. ‘‘We don't think the treatment will extend her life span. But if it reduced the seizures, that would be awesome.
‘‘It must be very difficult to learn if you blank out for a few seconds 50 to 100 times a day. It would give her a lot of her day back.''
Daryl-Ann developed cerebral palsy as a result of birthing complications which left her with brain damage, microcephaly and polymorphous epilepsy, Ms Bolton said.
While the condition is not degenerative, she is not expected to live beyond puberty.
The lowest point was a few days after Daryl-Ann was born when the doctors said she was not going to survive, Mr Fehsenfeld said. ‘‘That was a kick in the guts,'' he said.
But their daughter had gone on to do many things the doctors had said she never would, including breastfeeding on her own.
‘‘That was the best moment,'' Ms Bolton said. ‘‘Rob said if we can do that we can do anything.''
‘‘The doctor had said if she did any of these things he would eat humble pie,'' Mr Fehsenfeld said.
‘‘When that happened, I basically told him to get out his knife and fork.''
Other milestones have included Daryl-Ann interacting with her environment, recognising key caregivers, eating and drinking.
‘‘She's starting to vocalise now. They said she would never do that,'' Ms Bolton said.
The couple want Daryl-Ann to receive umbilical cord stem-cell therapy in the United States and Mexico.
Umbilical cord stem-cell therapy is different from the more controversial embryonic stem-cell therapy.
While it was still experimental and not approved by the US Food and Drug Administration, trials had shown it could produce some significant improvements, Ms Bolton said.
‘‘The stem cells go in search of damage to repair.''
The couple have set up a website - www.darylann.co.nz - to tell their daughter's story.
The website will also be used to promote umbilical cord stem-cell research in New Zealand and to market a cookbook they have created to raise funds for the treatment.
Another Dunedin couple, Lindsay and Shirley Turner, are seeking the same treatment for their son Caleb (2).
The Cerebral Palsy Society estimates about 7000 people in New Zealand have some degree of cerebral palsy, ranging from mild to severe.
