Now, with Memphis one of only three people in Australia with the disease, she continues to educate herself and is determined to raise awareness.

"I want to be 100 per cent across these things.

"It's called the silent disease and early diagnosis is important."

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The Taree mother explains that primary lymphoedema is lymph nodes that didn't develop properly or are damaged, so protein based fluid builds up and has nowhere to go.

Massage and compression pushes it to the lymph nodes that work and the body does the rest.

Kylee said they get a lot of people stopping them in the street, because Memphis's big bandages make it look like she has club feet.

"As long as they are willing to stay I will explain everything.

"It's about education. People don't know.... I tell them exactly what's going on.

"They are always lovely and supportive. They ask whether she will grow out of it and I say no and the look on their faces... and I say, 'it's alright'.

"Ninety per cent of people can't get their head around that there is no cure.

"We're lucky it's treatable. Some people don't respond to treatment, or can't manage it, and can get cellulitis constantly."

The rareness of the disease has been one of the difficulties they have faced, with not a lot of information available and many medical professionals not aware or trained in the condition.

When Memphis was finally diagnosed at four months, Kylee could only find two articles on primary lymphoedema online (secondary lymphoedema occurs in people who have had breast cancer or lymph nodes removed).

She is constantly learning and now maintains her focus on medical advice from the professionals who have training in the lymphatic system.

These include specialists at John Hunter Hospital children's ward and Westmead hospital.

"I'm very lucky to also have a couple of physiotherapists overseas. They love Memphis. They don't have many baby cases without having an underlying cause, like Turner's Syndrome."

In an effort to share their story and facts about the disease with the wider public, she has started a Facebook page (Kylee Kemp) and Instagram page (KyKemp).

She also wrote an article for the Australasian Lymphology Association Facebook page during Lymphoedema Awareness Month in March and has become a member of the Australasian Lymphology Association.

"I go to conferences. If I could train in lymphatic drainage... without having to work in a hospital, I'd do it."

She also shares information about fundraising organisations, many of which are based overseas but share funding worldwide.

Kylee said the rarity of the disease means there is no funding for any kind of research and believes it is so rare, funding will never come.

"We don't have the numbers to get funding to get people looking into the condition more."

Including Memphis, Kylee said there are three people, a five year old boy and a teenager, with the disease in Australia.

"We don't have many paediatric cases and the next case might not be for 10 to 20 years.

"We still need the support. If anything we need more support but we're not able to get support without people knowing."

When it comes to support from people going through what she is, Kylee has reached out overseas.

"There isn't anyone in Australia going through the same thing right now, at the age Memphis is.

"I've got a number of ladies. One had two daughters with it, they are 16 and 17 now.

"It was a long time ago she was in my position so I reach out overseas. People who have young kids like me."

One of those people has a daughter not much different in age to Memphis.

"She is so great. She has full care of her and is advocating and started her own fundraising worldwide for funding for garments."

Kylee said when it comes to the cost of the garments ($480 each), at the moment they have been able to manage it themselves.

"We've got hospital help and NSW funds a couple of pairs of garments every six months. You pay a small fee, it could be worse.

"We're very grateful. I don't want to go out looking for sympathy. I want her strong out there."

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