Waitara's Grace is Cystic Fibrosis pin-up
YVETTE BATTEN - NORTH TARANAKI MIDWEEK
Grace Paterson, of Waitara, is the national ‘pin-up girl' for this year's Cystic Fibrosis Awareness Week.
The adorable five-year-old, who started at Tikorangi School several weeks ago, is one of 500 people in New Zealand suffering with the genetic condition.
"It's just a matter of awareness and pulling on the heart strings for people to know how hard it is, not for the families I guess, for the person who's got it," says her mother Jessica.
"It's no different for us. We're fine. It's about looking after her and giving her the best possible life.
"It's such a hard disease to see. She looks fine to the eyes. It's what's going on inside."
Cystic Fibrosis (CF) is a rare genetic disorder, in Grace's case in both parents' genes, for which there is no cure.
It is basically a wasting disorder where one of the most prevalent symptoms is breathing difficulties. There are usually more ailments too.
Grace, for example, will have multi-organ issues over her lifespan. Right now this encompasses issues with both her lung and digestive system.
Management measures can extend a person's life and add to the quality of life.
For Grace this includes breathing exercises, chest physiotherapy and between 15 and 20 tablets a day. She also has an inhaler and takes a supplement drink.
At school she wears a special watch.
"When it beeps I have to go see Mrs Wood and go to the office and get my enzymes," Grace said.
These are digestive enzymes to help her body break down food because her pancreas does not work properly.
"It's all we know just having one child at the moment," says Mrs Paterson who, with her husband Sean, is a sharemilker. "You just have to do what you have to do."
Usually Grace has one hospital admission a year because of chest infections.
Last year she got pseudomonas - a severe chest infection that can cause serious problems down the line for CF sufferers.
"That's the hardest part about CF is you don't know what's going on until they're that sick it's too late to reverse the damage."
"You need to know your child or know the person with CF and know the symptoms.
"She contracted pseudomonas and we didn't even know she had it. It's asymptomatic."
Cystic Fibrosis Taranaki secretary Julie Fowler says sufferers and their families face health issues that increase with age and rate of the illness.
Funding and support is missing for working parents who end up off work for extended periods and administering specialised treatments themselves.
"There are no welfare benefits available to cover this and few employers can mange employees away for the length of time most CF families end up being with their children.
"Many CF parents end up with a CV that looks like they can't hold a job."
Ms Fowler said some families are single income with unsubsidised medications and with other children in the mix parents struggle to cope.
"There is the ongoing grief that you can't acknowledge or give in to," she says.
"You realise that there is no real treatment for this illness, only management techniques to try and keep your child alive as long as you can and with the maximum normality you can provide."
Cystic Fibrosis week runs from August 13 to 19. There are 15 people with the condition in Taranaki.
- © Fairfax NZ News
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