The Friends continue to transform treatment options for consumers attending the WCH. Last month the purchase of two Bodyguard Infusion Pumps assisted with minimising the stress for Nicola.
Nicola has 2 little boys aged 3 and 5, with Pompe disease that attend the hospital every 2 weeks for treatment, this treatment goes for about 5 hours. Pompe disease is an inherited disorder caused by the build-up of a complex sugar called glycogen in the body’s cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally.
As explained by Nicola “previously the boys where attached to a drip from a port under their skin for 4 hours, this frustrates them as they could not move around easily. Baylin (the 5 year old) had pulled out the cord from his port more than once trying to move around. Just going to the toilet was hard, they are only little and don’t understand that they need to wait while we unplug the drip. They just walk and pull at the tube. When they play on the floor they get all tangled, it really is stressful”
Following a trail with a ‘back pack ‘ with a battery operated infusion pump inside and seeking other funding options a request was submitted to Friends to support the purchase of two of these pumps.
Nicola goes on the say “we have been lucky enough to trial this back pack and it’s amazing. I know the nurses think it’s great and I from a mothers point, I love it. I’m calmer and less anxious. We are here at the hospital so much; I would hate the boys to be scared of coming. At one stage they didn’t want to come to the hospital but the back pack has changed that. It’s changed their life, my life and the nursers”.
The two pumps have now been in use since December and have certainly reduced the stress levels for all involved in the treatment. The Friends are very pleased to consider supporting any improvements which can be made for treatment options for hospital consumers.
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