Sarah makes May her special month

May is Cystic Fibrosis Awareness month and it holds a special place in Emergency Medical Dispatcher Sarah Davies-Richards’ heart, as her own four year-old son Lachlan has Cystic Fibrosis (CF).

The Kedron-based EMD is keen to raise awareness for CF and is also collecting for a Boredom Buster toy drive for children with CF who end up being hospitalised for longer periods of time.

Cystic Fibrosis is a recessive genetic condition which mainly affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus.

It’s the most common, life-limiting genetic condition affecting around 3,500 Australians, and around one in 25 people carry the recessive CF gene.

Babies born today with CF can expect to live well into adulthood, and while there have been significant advances in treatment and management, there is still no cure.

“In October 2017, my wife gave birth to our son, Lachlan, or Lachie-John Robot Dinosaur ... as he prefers to be called,” Sarah said.

“Three weeks later our world was turned upside down when we received the life changing phone call advising us Lachlan had Cystic Fibrosis.

“Like many other children with Cystic Fibrosis Lachie is one of the bravest, most resilient children you will ever meet.”

Sarah said so far Lachie has endured six admissions to Queensland Children’s Hospital (several requiring complete room isolation), three nasal gastric tubes for nutrition / bowel blockages, four PICC line surgeries (for aggressive antibiotic treatment), one very fast ride in an ambulance, countless blood tests and x-rays and daily physiotherapy with ongoing medications.

And the last two years of COVID in our community has created even more complexities for her family.

“Covid has been an extremely challenging time, not just in trying to maintain Lachlan’s health but also in accessing medications, working around hospital admissions (only one carer during a 24-hour period) and attending scheduled Cystic Fibrosis Clinics, either one carer or via ZOOM Meetings,” she said.

Sarah and four-year-old Lachie

Sarah, Lachie and Nola during his first admission to hospital

“Because of the threat of COVID, we have had to remove Lachlan from day-care and kindergarten numerous times over the past two years and it’s been extremely challenging juggling our work and Lachlan’s ongoing medical requirements.

“Cystic Fibrosis is referred to as “The Lonely Disease”, and it’s very difficult to explain to him why he can’t see his friends or go certain places as it might make him very sick – he’s so young.

“As Lachlan gets older, he won’t be able to connect with other children with Cystic Fibrosis because of the risk of cross infection, which was highlighted beautifully in the movie Five Feet Apart.”

Sarah said her family has been extremely fortunate to have an amazing care team at QCH.

“Last year I accepted a position with Cystic Fibrosis Queensland as a Community Support Person, and my role is to speak with parents of newly diagnosed CF patients to provide support, assistance, and advice,” she said.

Lachie's second stay in hospital

Cystic Fibrosis Queensland’s Header of Membership and Services Vicki Elson-Green said the organisation provides support to around 471 children under 18 years old with CF in Queensland, the Northern Territory and Northern NSW – anyone who attends Queensland Health for clinics.

“There are currently around 3,500 people in Australia with CF and 1000 live in Queensland,” Vicki said.

“There are a few reasons why nearly a third of these people live here – the climate is better as salty air is good for their lungs, the climate is warmer, and we have three dedicated CF clinics at the Children’s Hospital, Prince Charles, and Mater has a transition clinic, so we’re the only state in Australia with this dedicated critical care.

Lachie with Sarah during a more recent stay

“As a result, we also have worldrenowned clinicians here at these clinics.”

Vicki said generally children with CF end up in hospital up to twice a year for general health “tune-ups” but will also be admitted any time they get a cold or virus – anything which increases the chance of exacerbations on their lungs.

“Because their lungs are full of sticky mucus, an infection is much harder to shake,” Vicki said.

“Generally, it’s at least a two-week stagy and can be up to a 5-6 week stay.

“Every time their lungs get damaged it’s permanent, so we try to avoid that as the most common cause of death for CF is lung failure.”

Vicki said life expectancy had increased dramatically (from under 18 years 15 years ago to now up to 48-50 years old) and the latest drugs emerging are lifechanging so children born today will have a far better life expectancy.

“Over the last 15 years we’ve learnt a lot about infection control, for example, having four kids in a ward is an opportunity for cross contamination, so we’ve changed all that.”

But Vicki said the isolation the children face in hospital is difficult for them and CF provides Boredom Buster bags to help.

“We deliver about 225 bags a year to a hospital like QCH and post the out to some of the regional hospitals, but most kids come to QCH as it’s the dedicated children’s clinic with children ranging from newborn to 17-18 years of age,” she said.

“All about alleviating boredom. For example, word searches, Lego, colouring in books, things that take time to do and puzzles or older kids, spoilers like body wash, hand cream or nail polish.

“We try to provide things to make them feel loved and cared for and some of the younger kids don’t have family support for their stay as they’ve got other children to look after.

“Because they’re all in isolation rooms – it’s very socially isolating, and they don’t get to share a lot of their lived experience with other people going through the same thing.”

Outside her busy EMD and home life, Sarah volunteers for CF, running some of the CF parent support forums for parents of younger children which act as a peer support network.

Sarah is collecting toys and puzzles all May for CF Boredom Busters at the Kedron Park Headquarters and collection boxes can be found near C3, in the Media section and at the OpCen.

Riley is one of the many children CF Queensland provides Boredom Buster Bags to, to help him through his hospital stay.