As if managing a rare and incurable condition wasn't enough, the COVID-19 pandemic and resulting restrictions and isolation brought unexpected challenges, said Kylee Kemp.
Her daughter Memphis's paediatric primary lymphoedema affects her body's lymphatic system, the secondary immune system that fights infection, meaning the 18-month-old falls into the extremely vulnerable category.
"While people have been locked down, I've had to lock down to not put her at risk," the Taree mother said.
"If she was to get it, it would kill her. Without that immune system you don't have that defence."
Only a handful of specialists in the condition practice in Australia, with the majority of Memphis's treatment being overseen at John Hunter Hospital Children's Ward and at Westmead hospital.
But the coronavirus and Memphis's vulnerable status meant Kylee couldn't get her to appointments and the specialists who work with her were restricted as well.
"I took on 100 per cent of her care. It wasn't my field but I had to take on that. We can't stop treating it because COVID is here.
"We had telehealth conferences with the specialists.
"It was wonderful to have that connection, but it's not the same as going to see them and for that appointment and have a professional take (her care) on. But we were doing it by the phone and it's still on you.
"It's added pressure but we've taken it in our stride."
Kylee learned how to measure Memphis for her specialised garments.
"There are specific measurements and pockets for certain things. They are $480 a sock and you buy two at a time. There's only so much coverage we can get."
But then the places that were making the garments were shutting down.
"There was a delay in the supply coming to the hospital.
"It's a daily challenge. There was a little domino effect. I couldn't get the garment measurements or get them made.
"The whole routine had shut down, which brought added pressure and stress."
Kylee said things are back on track now though.
"We go to the chemist for supplies and John Hunter now sends supplies to my home because of COVID-19."
Thank you for valuing local journalism with your subscription. While you're with us, you can also receive updates straight to your inbox from the Manning River Times. To make sure you're up to date with all the news, sign up here.