An Eltham man living with a rare blood disorder says some days it is a battle to simply get up and help drop his 10-month-old son to kindy.
Stephen Franklin was diagnosed with aplastic anaemia on August 8, 2019, and while that diagnosis meant he finally had an answer for the previously unexplained symptoms he had been living with for some time, he says the diagnosis hasn't mean an answer to his illness.
"Aplastic anaemia a very aggressive blood disorder for which there is no cure."
Internationally aplastic anaemia occurs in only one or two people in a million a year, meaning Stephen is in a very small group of people.
"That makes it harder, there aren't lots of people to talk to about it, not all doctors know much about it, and so it isn't always well understood."
Stephen has talked to others online elsewhere in the world who have it, but at times news of their progress isn't reassuring.
"I know of seven people overseas with it who have passed away just in the time since my diagnosis."
Stephen's wife Alana says his illness means neither of them can work currently.
"It's too risky for me to go out and leave him, he can get very dizzy without warning for example."
On any given day Stephen can find himself fighting dizziness along with a range of other symptoms.
"I get headaches, bone pain infections and cramping. Phlegm and frothy mucus build up in the lungs, especially overnight and I have been rushed to hospital frequently, I even spent New Year's day there. I am always exhausted, tired and weak."
Stephen says he thinks it would be easier at times if the symptoms were more visible rather than hidden inside.
"It's hard for people to fully understand. If I walked around with an arm in a sling, they would see it, but with a blood disease it is hidden. It's a silent killer that people don't see."
Before the symptoms started, Stephen and Alana were happily planning for the start of their journey as parents. The couple had endured 13 miscarriages and three ectopic pregnancies before beginning an IVF journey that finally gave them they now 10-month-old Caleb.
The first sign that something was wrong with Stephen's health was when he started noticing unexplained bruises on his body.
"They appeared really suddenly on my arms and legs. At the same time I started to get really dizzy and spells of nausea. I was suddenly so weak, I couldn't even do my job. It was very out of character for me so we knew something was wrong."
Stephen spent nearly two months staying in the oncology ward in Palmerston North hospital while doctors looked for a treatment for him.
"They didn't know how to treat it, they thought I had a type of leukaemia at first, it took a while for aplastic anaemia to be diagnosed."
Once he had been correctly diagnosed, Stephen was started on a treatment regime of regular blood transfusions, immunosuppressants and other medications to keep his symptoms at bay.
"It doesn't cure it though."
Stephen says he is now taking each day as it comes, and tries to stay as positive as possible, despite the many unknowns living with his disease means.
"I just want to be able to do things like take my son to kindy, play with him in the park."
He and Alana had to give up their painting and decorating business due to Stephen's illness, but Stephen is determined to not let aplastic anaemia take over his life.
"I am working on building a tiny house in our garden as a project to keep me active as much as I can be and I am also going to try to raise money and awareness of this disease. I would like to raise money to help find a cure for it so others don't have to go through all this suffering."