Last updated 05:00 07/05/2013
A sick 3-year-old will fly to England next week to “get a new tummy” after spending most of her life in hospital with a life-threatening condition.
Madison Merrick was born with her bowel on the outside of her body – a condition called gastroschisis – and has spent just five months of her life at home.
Her latest stay at Starship children’s hospital in Auckland began last March when her intestines failed and the only option left was a transplant, which cannot be done in New Zealand.
Mum Alana Merrick, 21, is now packing their life into three suitcases after the Ministry of Health approved funding for a small intestine transplant to be done at Birmingham Children’s Hospital.
“I’m definitely nervous, but it’s Madiee’s last hope … they can’t do anything else for her here.
“We are so grateful that we’ve been given this chance, I’m just hoping and praying that it goes well.”
The ministry said Madison was receiving funding from the High-Cost Treatment Pool – including assessment, transplant and recovery as an inpatient – but it was not possible to put a figure on the amount at this stage.
A sum had also been set aside to allow a support person to travel and stay in Britain, with the cost shared by the ministry and Waitemata DHB.
Ms Merrick said: “The doctors have been negotiating with the Ministry of Health for a long time so I don’t know the figures and numbers, I just know that it’s a lot of money.”
The young Auckland mum had so far raised $73,000 of the $200,000 she is expected to need to live in Birmingham, including accommodation and food, with help from The Kids Foundation charity.
Her mother will fly with them at her own expense and will spend three weeks helping them settle in. A medical team from New Zealand will also take care of Madison during the long-haul flight.
It isn’t known how long she will have to wait for a donor match to be found. If the operation goes ahead, she will have to stay in Birmingham for at least 18 months, Ms Merrick said.
“I think it’s safe to say I’m definitely a bit worried – it’s a whole new world that I’m going into, but I’m confident it will all work out for the best.”
She hoped the transplant would enable her little hazel-eyed girl with soft brown curls to live a normal life.
“That’s all we are hoping for.
“Madiee keeps saying that when she gets her new tummy she won’t need tubes any more. She’s coped really well with it, but I guess it’s all she has ever known.”
The Kids Foundation is flying Jodee Reid up to Auckland this week to speak to Ms Merrick about her family’s experience of living in the United States so her daughter Matisse could get treatment for her rare disorder, chronic idiopathic intestinal pseudo obstruction.
The mothers are friends on Facebook but have never met in person.
“It’s not a cure, it’s swapping the devil you know for the devil you don’t know, but for us it is 100 per cent better for Matisse than it was before,” Mrs Reid said.
Matisse, 12, had never eaten until having a stomach, intestine, pancreas and bowel transplant in 2010.
To follow Madison’s journey or make a donation visit www.madisonmerrick.org.nz or text GIVE to 4462 to make a $3 donation.
– © Fairfax NZ News