Visit the Dance household in Roxburgh and you will be greeted by an enthusiastic dog and only marginally less enthusiastic children excited to show off their artwork and favourite toys.
Kat Richards and Daniel Dance are the patient parents of their bundles of energy, Harriet, 3, and Alfred, 2. Their home is a joyful mix of Bluey on the television, books and toys.
Like most toddlers, Alfred is keen to show off his favourite tricks and making choices when offered options by his mum.
Kat and Daniel are proud of their children and would do anything for them.
However, scratch the surface and nothing here is quite as it seems.
Alfred’s tricks include showing how he can push the plunger on his many medicine doses himself. His choices include taking his medicine orally or putting it into the peritoneal port in his stomach.
Kat is about to give Alfred one of her kidneys.
At Kat’s 12-week ultrasound the couple were told something was not right but they were thankful most of those fears were not realised.
Covid restrictions at the time meant Kat had to go for the scan on her own. To add to the stress, the family were about to head to England to visit Kat’s family and had Harriet, who was 15 months old. Their midwife was outstanding through that time, Kat said.
Scans for baby Alfred had to be done in Christchurch for the rest of the pregnancy, which meant the family had to travel from Roxburgh.
Kat and Daniel’s travel was paid for but Harriet went at their own cost.
Alfred had to be born in Christchurch. They knew he would need surgery as soon as he was born as he had posterior urethral valves, an obstructive disorder that occurs in about one in 8000 baby boys. For weeks before his birth, they had to be in Christchurch. Initially he seemed fine and they thought he was doing significantly better than anticipated.
However, while his delivery was speedy and natural, Alfred needed 51 minutes of oxygen at birth as there had been no fluid surrounding him in the womb, due to his condition, which affected his ability to breathe.
He had 2% kidney function at birth and he was nicknamed "the sieve", thanks to the number of blood tests he needed.
At 4 days old, he was in theatre.
"He was sick; he was very, very sick," Kat said.
Daniel and Harriet stayed at Ronald McDonald House while Kat was in the neonatal intensive care unit with Alfred. She would hire an electric scooter and zoom to Ronald McDonald each afternoon to have tea with Harriet before racing back to the hospital.
"Time up there was very precious," Daniel said.
Just how much Harriet had absorbed, despite being so young, was revealed recently when she heard a baby on an aeroplane crying.
"Is that baby having a blood test," she asked.
Alfred had been to Starship hospital so he would often run into the ward and greet staff.
Daniel and Kat had always known they would give Alfred a kidney if it was possible. After extensive testing, psychological as well as medical, it was determined Kat could be his donor.
The community where Daniel grew up had been enormously helpful. People would offer to help out at home or drop off a meal.
Their costs had mounted over the years from airfares for Harriet or fuel to drive to Christchurch as well as incidental costs which compounded from weekly scooter tickets to having to buy meals out to buying extra clothing when what was supposed a day visit turned into days-long stays in hospital.
Kat could not go back to work and Daniel had taken many weeks leave from his job.
Teviot Valley Kids Count Fund had been helpful but the family was aware they still had a long way to go, Daniel said.
With the surgeries coming up, Kat’s mother is coming from England to help out. Daniel needs to keep a wage coming in.
Kat and Alfred will be in Starship for three months after the surgery but Harriet will need to see her mother during that time, which means more airfares.
A date for the surgeries was still a long way off, Daniel said.
