Olive is four years old, but unfortunately hasn’t had the same childhood as most children her age.
Olive has spent her life in and out of hospital and has already had well over 30 admissions to hospital so far. Earlier on in her life Olive was admitted to hospital for simple colds, sniffles and viruses relying on oxygen to help her breathe, as well as more recently for illness and regular admissions for treatment. Length of stay varies each time ranging from days to weeks at a time. While there are lots of distractions in hospital Olive always misses her big brother, her puppies and most of all her bed! Between admissions Olive spends her time at home doing all her favourite things like playing with play doh, her puzzles and games, and doing arts and crafts as she is unable to attend preschool due to infection risk.
Olive’s symptoms started when she went into respiratory distress just after birth and was admitted to the NICU, relying on ventilation to help her breathe. At 17 months old after many tests and admissions Olive’s bloods were sent for genetic testing and after much waiting and anticipation, four months later we received the results. Olive was diagnosed with the rare lung disease called Surfactant Protein C Deficiency (SP-C).
Olive’s diagnosis brought more questions than answers, we have a name but little in the way of long term outcomes. There is not a lot of information about SP-C and due to the rareness of the condition; there are no clear guidelines, no protocols, and limited treatments.
Olive uses a CPAP to sleep at night and for breaks during the day when she is needing a little more help breathing. Olive loves her CPAP and the way it gives her her ‘breaths’ back. She also has a port-a-cath for IV access or as she likes to call it her ‘button’.
We find that most people have never even heard of this condition, so when we tell someone Olive has SP-C they generally don’t know how to address it. Often they will ask inappropriate questions around life expectancy or if she will grow out of the condition and as this isn’t known due to the rareness of the condition, it makes us feel quite uncomfortable.
People can be quick to judge Olive.
They make comments when she becomes too short of breath to walk and requires assistance and people automatically make the assumption that she is lazy. We have also been confronted in public for using disabled parking. Just because Olive might look well in appearance, some days she struggles to walk a short distance.
I wish people would treat people with all lung conditions just like everyone else, to take the time to listen to our stories and not jump to conclusions.
It would be really nice to see people treat Olive like any other child and focus on the things she can do, rather than the things she can’t. What Olive lacks in ability to run around she more than makes up for in personality.
Lung Foundation Australia has provided amazing assistance through The Young Lungs Program, which gives hope to families like ours, connecting us with families on similar journeys, making our lives a little less isolating.
PLEASE DONATE to the Young Lungs Program and help children like Olive have a bright future.