It's a 24 hour job that Kylee Kemp has embraced as she cares for her 18-month-old daughter Memphis and her paediatric primary lymphoedema.

"Everything is so unknown. It's a silent disease and there's zero cure for this. It's just about the management of it."

The rare and incurable condition comes from lymph nodes in Memphis's lower legs and feet that don't work properly. All the steps they take everyday pushes protein fluid build up through to working lymph nodes to be processed.

It's important to keep the fluid moving otherwise tissues can harden.

"If you don't get onto it each day it can become a permanent issue. It decreases your lifespan and you can get cellulitis," said Kylee.

The lymphatic system is the secondary immune system that fights infection.

"The skin treatment is our new normal. It was a bit daunting but it became the routine."

Memphis is fitted with custom compression garments once she wakes up in the morning.

After bathtime she is massaged with moisturiser and then Kylee performs a 10 minute round of exercises, stimulating the lymphatic system.

After the massage and exercises, Memphis is fitted with her compression bandages for the night.

She is now pulling her garments and bandages off day and night and if this happens, the routine has to be redone.

"Care is required around the clock."

In the beginning Kylee found it tough.

"It used to take me a couple of hours because I was so particular about making sure I was doing it correctly.

"It was trial and error. I wasn't confident and would second guess everything. The results speak for themselves. We've never had a problem.

"And although we're still getting good results, if I take the bandages off, in 15 minutes she has balloons on the ends of her legs."

Kylee tries to make the process fun.

"She doesn't quite understand. We try and not make it a bad thing.

"I don't want any sort of negativity from me for doing it. I have a smile on my face doing massage. I want her to know I always did it and was happy to do it."

Memphis's three-year-old sister also enjoys being part of the process.

"When I get the bandages on, she'll come out and help with the bandages. I have spare bits of leftover garment and she wants them on her.

"It's working, she thinks lymphoedema is a great thing."

Kylee said they are taking every day as it comes, with the lack of medical information and knowledge meaning they don't "have much to go by".

She has been documenting things as she goes and said it can be frustrating sometimes to constantly defend her many hours of experience and knowledge with some medical professionals (especially those who don't specialise in that field), because she doesn't have a professional qualification.

"I believe this needs to change."

Kylee is looking to set up a 'hospital room' in the house with all Memphis's supplies.

"If you could see the amount of bandages. There's seven different layers on one leg. It can be tedious."

She also wants to empower Memphis as she gets older to look after her own care too.

"I want her to manage her compressions. She's always got herself and she'll always have me. Mum will always be there."

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