The Rocky Bay Equipment team hit the road in November, travelling to Broome and partnering with local organisations to optimise the quality of life of a young man living with Duchene Muscular Dystrophy.
Twenty-year-old Dylan Marsden lives with Duchenne Muscular Dystrophy (DMD), a progressive disease that causes muscle degeneration, including to the muscles used for breathing and keeping a straight posture. His mum is his carer and their family are based in Derby.
Dylan has a history of complications due to DMD. In 2018, he developed pneumonia and respiratory failure when he was medevacked from Derby to Perth. To ease this life-threatening condition, Dylan was given a tracheostomy to assist with severe sleep apnoea and hypoventilation.
After a four-month stay in hospital, Dylan’s tracheostomy was removed, but as his breathing muscles had weakened so much the West Australian Sleep Disorders Research Institute (WASDRI) at Sir Charles Gardiner Hospital (SCGH) set Dylan up with a permanent at home ventilation to aid his breathing.
Dylan was also identified as an at risk patient due to his condition and the remoteness of his location. It was determined by SCHG he would need to upgrade his home ventilator to two life support ventilators, one for day use and one for night use, to improve his safety, which they organised for him.
While all of this would help Dylan in the short-term, funding was being secured for a longer-term solution. The plan was to mount a variable positive airway pressure (VPAP) unit onto Dylan’s powered wheelchair, which would be undertaken by the Rocky Bay Equipment team. Dylan was to be flown back to SCGH in Perth to have the VPAP mounted, and education and training given to Dylan and his mum.
Unfortunately though, flying would not be an option.
Dylan was traumatised after complications on a previous flight, where he experienced respiratory failure when his machine stopped working and the flight was forced to turn around.
His mum was also unable to leave her three other children without care, and sending a carer to accompany Dylan and admitting him into a high-dependency unit in Perth for the five-days he needed to be there would be a very costly exercise.
WASDRI Sleep Scientist, Marie Hunter, contacted Rocky Bay’s PostureTech Manager, Eamon O’Brien, to share Dylan’s story and ask if the team could spare Technical Officer, Ken Larsen, who specialises in fitting customer-made brackets and mounts to wheelchairs.
Dylan’s ventilation team was soon formed – including Ken Larsen, Marie Hunter, Sarah Hull from Resmed, who agreed to fund the trip, and respiratory home visiting Nurse, Brooke Kyle – and a plan to avoid uprooting Dylan and his family from Derby to Perth for another hospital stay was formulated.
The team travelled to Broome on 26 November 2019 to work with Dylan, who would have a more manageable two-hour drive to meet with his team.
Not only was the team able to provide the same quality of care Dylan would have received in Perth, they would also be able to easily follow-up to ensure the effectiveness of the treatment and give Dylan’s mum and carers confidence in handling his equipment.
Brooke and Marie set up Dylan’s respiratory equipment in his respite accommodation, and provided education and hands-on training to Dylan, his carers, the night staff, and Dylan’s mum, who made the journey from Derby to Broome for the training.
The Sleep Clinic team at SCGH were also available remotely to download Dylan’s sleep data to ensure adequate treatment and identified the need for additional equipment which was couriered straight to Dylan.
Rocky Bay Equipment’s technicians are no strangers to travel in order to service Rocky Bay’s rural customers, with a technician travelling to Bunbury once a month to undertake complex seating work otherwise not available in the area.
“We have also undertaken trips to more remote areas of Karratha and Meriden to service, repair and adjust customer’s equipment,” explained Eamon.
“Our techs enjoy it. They work hard, sometimes customers line up down the road to be able to see them. They find it rewarding.
“Our customers are very appreciative because the services are not readily available in those areas.”
Charitable organisation, Life Without Barriers, funded Dylan’s respite care during his stay in Broome, and the local Men’s Shed readily agreed to provide a space and tools for Ken to mount the life-saving VPAP onto Dylan’s wheelchair.
Ken spent many hours researching and developing a suitable cradle to fit the VPAP unit, which would then take him around seven hours to install.
Eamon explained that having the breathing assistance equipment mounted to his wheelchair meant that Dylan would have the freedom to get out into the community.
“The technology offers 16 hours of battery life which will allow him to be much more independent and unrestricted, without it he would have been very limited in what he could do,” added Eamon.
The cradle that Ken developed for Dylan’s VPAP unit also offers weather and impact protection.
Thanks to the support and collaboration of a number of organisations, Dylan received the best standard of care possible and his everyday life has become safer and much more manageable for him and his family.
A big thank you to the following organisations who helped to make this mission possible:
- Marie Hunter and the WASDRI team, who undertook a lot of background work to make this trip possible
- Sarah Hull and the Resmed team for readily financing supporting the Broome trip
- Life Without Barriers for supporting Dylan with respite care
- Men’s Shed Broome
Dr Chris Kosky who communicated with the Department of Health, Sir Charles Gardener Hospital and Dylan’s GP, Dr Sarah Woodland, to seek permission for this trip to take place.