Last updated 05:00 22/07/2014
Desperately ill Madiee Merrick has been waiting more than a year on the other side of the world for surgery that will save her life.
This month the 4-year-old Unsworth Heights fighter got one step closer to the finish line.
Mum Alana Merrick signed what she says is the most important document she will ever put her name to – a form that puts her daughter on the waiting list for a small intestine transplant.
Madiee was born with the rare disorder gastroschisis and her small and large intestines sat outside her abdominal wall.
She also had a hole in her bowel.
Surgery needed to save Madiee’s life isn’t available in New Zealand so the pair moved to the UK.
The sick toddler still has to wait for a suitable donor match which could take more than a year, but Merrick says being one step closer is a relief.
Doctors have tried various procedures over the last year to get Madiee’s stomach working independently, the 22-year-old mother says.
“They removed part of her intestine, tried a resection. These things took away her pain but her tummy still wasn’t working on its own.
“When we got here we were expecting to be put straight on the transplant list but doctors had to make sure it was the best option,” Merrick says.
Madiee’s health has improved, despite a failing intestine, and she finally sleeps through the night for the first time, Merrick says.
“Even though she is connected to pumps for 20 hours a day, she is pain-free and she’s the healthiest she has ever been.”
Madiee had spent all but five months of her life in hospital before the shift to the UK.
Alana says having her little girl living at home is the best gift of all.
The young mother says doctors originally said the pair would have to stay at least two years after Madiee receives her transplant.
“They now say once Madiee is stable after the operation we’ll only have to stay six months.
“We can’t wait to come home,” Alana says.
Madiee’s situation has made Merrick look at life differently and realise how precious it is, she says.
“I will stand by Madiee through whatever.”
The Ministry of Health has funded part of the trip while the remainder is being met by private donations and sponsorship.
Visit madisonmerrick.org.nz to follow Madiee’s journey or make a donation.
– North Shore Times