Kylee Kemp is determined to create a positive future for her daughter Memphis, despite the challenges ahead.
As the youngest person in Australia with paediatric primary lymphoedema (and one of only three in the country), the path for the 18-month-old will not be easy.
"I want her to embrace it. To say look at me, I'm not from the mould, and breathe fire in that situation," said Kylee.
Primary lymphoedema is lymph nodes that didn't develop properly or were damaged, and for Memphis they are in both her lower legs and feet.
"Protein based fluid builds up and has nowhere to go," said Kylee. "Massage and compression pushes it to the lymph nodes that work and the body does the rest.
"It's like a traffic jam. You've just got to get around the jam."
Because of its rarity and the lack of available information and medical training about the disease, Memphis wasn't diagnosed until she was four months old.
Kylee had noticed the swelling in Memphis's feet just a couple of hours after she gave birth to her at Manning Base Hospital in January 2019.
"I was asking everyone. A midwife who had been in the department for 40 years had never seen it."
The paediatrician also became aware of the swelling and immediately looked for other markings or symptoms to link it to a genetic disorder, such as Turners or Noonans, but neither seemed to apply.
Being a mum you have your instincts. I knew this was not right. The swelling in her feet was only getting worse.Kylee Kemp
Memphis stayed in the hospital's special care nursery for two months while blood and genetic tests were carried out.
With no genetic cause for the swelling found, she was discharged and sent home with reassurances her feet would be completely normal by the time she needed to wear shoes.
But Kylee felt something wasn't right and two weeks after being sent home, while also trying to establish feeding and life with a newborn and two-year-old, she jumped into action.
"Being a mum you have your instincts. I knew this was not right. The swelling in her feet was only getting worse.
"We'd had extensive genetic testing and there was nothing in her genetics that related to her feet. I thought, what do I do now? No one's referring me anywhere."
She started calling private and public health professionals trying to get an appointment but it proved difficult, something that frustrated Kylee.
It wasn't until she walked in the door at Community Health in Taree (who she wasn't even seeing) and spoke to the woman at the counter, that she had any luck.
"She must have heard the desperation in my voice. The lady at the hospital made phone calls for us.
"She said, I'll get the referral and get you an appointment. She didn't have to. She was a deadset angel."
Eventually Memphis was seen by a practitioner named Odette at Newcastle's John Hunter Hospital, who diagnosed her with paediatric primary lymphoedema.
Memphis's care now includes specialists at John Hunter Hospital and Westmead as well as contact with physiotherapists in the United States.
Kylee said there is minimal training into the disease generally and many medical practitioners don't have any knowledge of it.
Because there's also a lot they still don't know about it, Kylee is documenting everything.
"They say there's no pain but they don't know... she's a baby and not screaming in pain. When I would touch her feet she would scrunch it up and giggle... we won't know until she's older when she can tell me.
"I want to make sure it's on a database. We are treating little kids who can't speak."
Rare and with no cure, the lymph nodes in Memphis's lower legs and feet don't work properly.
Massage, exercises, compression bandages and custom garments are administered daily to push protein fluid build up through to working lymph nodes to be processed by the body.
Kylee said moving the fluid through is important because it can build up and harden.
The risk of cellulitis is high. Kylee said even a mosquito bite in her lymph could see her with cellulitis, which can end up septic because there's nothing to fight the infection with.
"I'm a little bit anal and cautious.
We're lucky it's treatable. Some people don't respond to treatment, or can't manage it, or have cellulitis constantly.Kylee Kemp
"She's got it in her lower limbs. It's in your glands and can happen anywhere in the body. At this stage it's in her lower legs but more could turn up. It's very common.
"We're lucky it's treatable. Some people don't respond to treatment, or can't manage it, or have cellulitis constantly."
And while Kylee admits she's had a few 'pity parties' where she questions why it happened to her daughter, on the whole her mindset is positive.
"We suck it up and do it. There's fewer of those days now. It's in the mind. You stop whinging and your mind eventually stops feeling sorry for itself. This is what it is."
Her focus is now on raising awareness of the disease and being an advocate for it and her daughter.
She also accepts the financial costs that come with giving her the best care possible.
"There's only so much coverage you can get. The specialised garments are $480 a sock and you buy two at a time. We do need to take that burden away."
As for the specialised garments, Kylee said there is a range of wonderful colours, patterns and stitching available for children, but you do pay a bit extra.
"I will take it on the chin if I have to for my daughter."
On her bad days, Kylee said she'd like someone to talk to who can say, 'I know exactly how you feel', but because there are so few cases in Australia and no parent in the country going through the baby/toddler stage with her (there is a five year old boy and teenager), she has reached out overseas for support.
She has also discovered an annual camp in America for children with this condition, but said it will be a few years before she will take Memphis over.
"She's only 18-months-old at the moment. It will be of more benefit when she's beginning school and interacting with other kids."
Looking down the track there is a dye test Memphis can take to find out where the damage is, but Kylee said she was a bit young for that yet.
In America they are also experimenting with surgery, but results vary and Kylee said it isn't something she wants to put her daughter through if she won't necessarily be better at the end of it.
"We won't rush into anything, we'll continue her treatment and keep advocating."
Kylee said it is unclear if the disease is in the family. "We can't find a genetic link but there would be an hereditary match there somewhere."
She's a trouper. I have a brilliant daughter. From day dot she's taken the poking and the proddingKylee Kemp
She said she and Memphis's father will be giving blood for testing to determine where it might have come from.
Kylee is determined to support her daughter in every way possible and create a strong mindset within her.
The fact there is no cure is something Kylee has come to accept.
"There's a lot of things out there with no cure.
"We're lucky that she's responded to treatment. I just think, out of all of it, we've got to be grateful for our situation.
"She's a trouper. I have a brilliant daughter. From day dot she's taken the poking and the prodding.
"I see her being an advocate for the cause and taking on the world. I want to instill that in her."
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