"The odds are stacked against you".

These are the heartbreaking words no parents want to hear from a doctor.

And yet for Suzie Small and Jimmy Francis, from South Ham in Basingstoke, this is their reality as they fight to get their 16-month-old baby a life-saving heart transplant.

Baby Romeo, born on April 5, 2019, weighing a tiny 4lbs 5oz, has been diagnosed with a rare heart condition - restrictive cardiomyopathy - which affects less than 1 in a million children. 

His chance of survival is down to whether he can be given a heart transplant - though doctors have warned he could be turned down due to the size of his heart. 

His mother Suzie, aged 29, said: "It's been tough from the point of Romeo being diagnosed. Pregnancy was filled with worry and the unknown.

"It's gradually got worse and the day we nearly lost him I was thinking I need to save him and want him to live.

She continued: "Nothing matters [to me] as long as he is still alive. I was heartbroken when he was diagnosed; it was the scariest moment of my life. 

Speaking about Romeo's condition, the full-time mum explained: "It is the rarest form of cardiomyopathy. The heart does not relax properly due to the heart muscle being very stiff causing the atriums to enlarge."

Basingstoke Gazette: Baby Romeo at Southampton General HospitalBaby Romeo at Southampton General Hospital

A family friend has set up a fundraising page to raise awareness and funds to help cover the cost of any additional medical treatment. 

While Suzie and  Jimmy, a decorator, are working around the clock to find a heart specialist and source a heart donor.

Suzie said: "It's always in the back of my mind that I could lose him.

"He could die. It's a scary condition and you know he will get worse but don't know when that will happen."

Romeo is now diagnosed with restrictive cardiomyopathy, where only one in a million babies have this rare heart condition; and the only cure is a heart transplant.

"We wanted to raise awareness for organ donation, and the money will go towards hydrotherapy to get Romeo fit enough for the surgery," Suzie explained.

Basingstoke Gazette: Romeo has had several tests and scans over the last yearRomeo has had several tests and scans over the last year

A childhood friend, Rowan Vine, 37, from South Ham has set up a GoFundMe page to raise awareness about Romeo's rare heart condition.

Speaking to The Gazette about the baby's heart defects, Rowan said: "Romeo's heart is too big and is really swollen.

"He has had four operations on his heart before he was one and had open heart surgery.

"I have set up the GoFundMe page to raise awareness because Romeo will need constant care and equipment if he wants to continue living.

"Romeo has been in a lot of pain and cries when he sees a doctor dressed in blue or green.

"But there is always hope, and we have already raised over £6,000 out of the £10,000 target in just two days."

To help Romeo, you can make a donation on Romeo's heart GoFundMe page here and click 'donate now'.