Connie Lacey, 4, and Sienna Machin, 10, are like sisters, but they are not allowed to be near each other for long.<\/p>\n
“We’re supposed to stay away from each other but we’re friends, so it’s hard,” Sienna said.<\/p>\n
“If we’re really close to each other, we might get sick.”<\/p>\n
<\/p>\n
Connie and Sienna have a special bond. (ABC Western Qld: Grace Nakamura)<\/p>\n
Both girls have cystic fibrosis (CF) and live in the outback community of Longreach, population 3,647.<\/p>\n
Their families have known each other for years so it was bittersweet when Connie was diagnosed with CF, a few years after Sienna.<\/p>\n
“We were the only people that the [Laceys] knew that were on the same journey,” Sienna’s mother, Brooke Machin said.<\/p>\n
“We are grateful to have someone else to understand that is close by \u2014 it can feel very lonely otherwise.”<\/p>\n
<\/p>\n
Brooke Machin travels with Sienna to Brisbane for her treatments. (ABC Western Qld: Grace Nakamura)<\/p>\n
More people with CF staying rural<\/p>\n
Despite being 1,200 kilometres from the Queensland Children’s Hospital, both families say they would not dream of relocating to Brisbane.<\/p>\n
“Living out here, people think it impacts our access to health care but that’s definitely not been the case,” Ms Machin said.<\/p>\n
<\/p>\n
Longreach is 1,177 kilometres away from Brisbane. (Datawrapper: Grace Nakamura)<\/p>\n
Cystic fibrosis is a chronic genetic condition that primarily affects the lungs, pancreas, and digestive system.<\/p>\n
It is a complex and incurable life-limiting disease.<\/p>\n
However, Cystic Fibrosis Queensland CEO Petrina Fraccaro said advancements in treatments had allowed more people with CF to live in rural and regional areas.<\/p>\n
“People used to have to attend clinic appointments four to five times a year, and any hospitalisation could be from one to four weeks in duration,” Ms Fraccaro said.<\/p>\n
“Now, people only have to come to clinic once, maybe twice, a year.<\/p>\n
“That’s reduced a lot of the burden of the disease \u2026 which is wonderful news for allowing families to remain in their local communities.”Outback air and care<\/p>\n
The fresh country air has almost been a treatment itself for the girls.<\/p>\n
“City smog” can be problematic for people with CF, who are more susceptible to lung infections.<\/p>\n
<\/p>\n
Starlight’s Lookout, a popular view of the outback horizon outside Longreach. (ABC Western Qld: Hannah Walsh)<\/p>\n
“The air is dry, there’s no humidity, it’s a really safe place for Connie to be,” Ms Lacey said.<\/p>\n
She said the care they received from medical services in Longreach had been “second to none”.<\/p>\n
“We have \u2026 regular telehealth [appointments], plus the Queensland Children’s Hospital and Cystic Fibrosis Queensland ensure we still receive the same gold standard of care as if we were living closer to the city,” Ms Lacey said.<\/p>\n
<\/p>\n
Connie with her nebuliser that helps her to breathe. (ABC Western Qld: Grace Nakamura)<\/p>\n
Ms Machin agrees.<\/p>\n
“If we need to go to Brisbane, we jump on a plane and they prioritise us because they know we only have one plane a day,” she said.<\/p>\n
Travel to Brisbane ‘a huge impost’<\/p>\n
Despite the benefits, living so far from the capital city has some drawbacks.<\/p>\n
Travel from Longreach to Brisbane is expensive and time-consuming.<\/p>\n
Ms Machin said they received an allowance from the Patient Travel Subsidy Scheme (PTSS), but the amount has not changed in years.<\/p>\n
“Having to go away already has an emotional impact, so that’s just an added stress if you have to book accommodation and the price has hiked up,” she said.<\/p>\n
<\/p>\n
Sienna Machin travels from Longreach to Brisbane several times a year for her cystic fibrosis. (Supplied: Brooke Machin)<\/p>\n
The current PTSS provides $70 a day for accommodation and 34 cents per kilometre travelled, a figure that has not changed since 2013.<\/p>\n
In September, Health Minister Tim Nicholls pledged to review the scheme’s allowance in next year’s state budget.<\/p>\n
Ms Fraccaro said the minister’s promise was “beyond too little, too late”.<\/p>\n
“I was very disheartened that he felt this wasn’t an urgent matter,” she said.<\/p>\n
“The provisions covered by that particular subsidy don’t even touch the sides of the full cost of a trip to Brisbane for clinic duration.”<\/p>\n
Improvements over time<\/p>\n
For the past 35 years, the Longreach community has turned up for an annual mini marathon to raise funds for cystic fibrosis research.<\/p>\n
<\/p>\n
Horse-riders setting off for the annual Meagan Walker Mini Marathon in Longreach for cystic fibrosis.\u00a0 (Supplied: Meagan Walker Mini Marathon)<\/p>\n
The event is named for another local woman, Meagan Walker, who had cystic fibrosis and died at the age of 23.<\/p>\n
Her aunt and uncle, Rosemary and Warwick Champion, have been organising the event ever since.<\/p>\n
“These little people, Connie and Sienna, have a lot better quality of health than Meagan could ever have dreamt of,” Ms Champion said.<\/p>\n
She said it gave her hope for continuing improvements in the treatment and quality of life for people with CF.<\/p>\n","protected":false},"excerpt":{"rendered":"Connie Lacey, 4, and Sienna Machin, 10, are like sisters, but they are not allowed to be near…\n","protected":false},"author":2,"featured_media":65879,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[44825,38026,103,397,396,61,60,44824,13378,44823],"class_list":["post-65878","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-atient-travel-subsidy-scheme","tag-cystic-fibrosis","tag-health","tag-health-care","tag-healthcare","tag-ie","tag-ireland","tag-longreach-hospital","tag-outback","tag-queensland-childrens-hospital"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/65878","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=65878"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/65878\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/65879"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=65878"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=65878"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=65878"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}