Fundraising concert for opera singer Anna Leese whose husband has motor neurone disease

Stefano Guidi , Anna Leese and baby Matteo at home in Warkworth. Photo / Doug Sherring

In the living room of their Warkworth home, New Zealand opera star Anna Leese Guidi and her winemaker husband, Stefano Guidi, are surrounded by the paraphernalia which accompanies the arrival of a baby: clothes, toys and sleep drops.

Three and a half month old Matteo, a bright-eyed boy who's clearly curious about the world around him, sits between his adoring mum and dad unaware of the terrible predicament they face.

Six weeks before Matteo was born, the couple was told Stefano has the most aggressive form of motor neuron disease, Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, and would likely live just another two years.

Still reeling from the April diagnosis, Stefano strokes his son's head, smiles and describes Matteo as "a beautiful blessing".

He and Anna are preparing to sell their home to move to Dunedin, to be closer to Anna's parents, and researching treatment options which offer hope of prolonging Stefano's life. This includes contacting research institutes around the world to find out what trials Stefano may be able to take part in.

"I am a practical person and it's extremely important for protect my wife and son so I took the decision to try to move to Dunedin where there is support," he says. "Without this, I was so afraid of the future. At the moment, Anna is helping me in my daily life - I can't even dress myself - and doing a lot of tough jobs so I want them to be safe."

Now friends in the opera community are joining forces to ensure the family will face the future - whatever it holds - with as much love and support as possible. A special fundraising concert for the family is planned for September.

The concert will include popular songs from the worlds of classical music and musical theatre and has attracted the likes of Helen Medlyn, Robert Tucker and James Ioelu from the upcoming season of Sweeney Todd, 2016 Lexus Song Quest winner Benson Wilson and finalists Madison Nonoa and Filipe Manu and internationally renowned pianist Stephen De Pledge among with many others.

Anna is helping me in my daily life - I can't even dress myself - and doing a lot of tough jobs.

New Zealand Opera General director Stuart Maunder says there has been a huge response from the arts community.

"As soon as we heard the news about Stefano, many of the couple's friends in the music world got in touch to ask what they could do and this concert will be a great way for friends and music lovers to support the family."

A former winner of the Mobile Song Quest, Anna graduated from the University of Otago in 2003 and moved to England to continue her studies at the Benjamin Britten International Opera School at the Royal College of Music in London. She has performed all over the world, including at Royal Opera House Covent Garden, and won a number of prestigious prizes.

The couple, who met in Italy five years ago, moved to New Zealand just over a year ago to begin a new life here.

Anna says funds raised from the concert will help with medical expenses and support for the family during the coming months. A Give a Little page has so far raised $69,000, but despite the support, the new mum admits it's tough.

Writing on the blog she has started to detail the family's journey, Anna says the illness hangs over everything in their home.

"...everything we took for granted previously is now in question. It's difficult for Stefano to hold Matteo for more than a few minutes, which is hard for both of us. Dressing is becoming an issue and opening tins, packets, holding anything heavy...

"People are telling me to try to remain positive through this but I'm finding that impossible. The most difficult thing to comprehend is the relentless and aggressive nature of the disease, and the sense of immense loss each time Stefano presents with a new symptom."

ALS causes neurons which control certain muscles to die. As muscles decrease in size, they weaken making it difficult to move, speak, swallow and, eventually, breathe.

What: An Evening for Stefano Guidi and Anna Leese
Where & when: Concert Chamber, Auckland Town Hall; Wednesday, September 7

• To make a donation to Anna, Stefano and Matteo, go to https://givealittle.co.nz/cause/supportstefanoguidi

• To find out more about MND, see http://www.mnda.org.nz/