Life saving treatment provides hope for little Alfie Butler

Little Alfie Butler was just eight months old when he fell ill and was rushed to hospital where doctors told his parents James and Charlotte they suspected he had meningitis.

The couple had no choice but to wait with bated breath to find out what was wrong.

But nothing could have prepared them for the devastating news that their baby boy had a potentially deadly brain tumour.

Now finally the Butlers have got something to smile about after learning that Alfie has been approved for Proton Beam therapy in America.

Today the family of four were due to fly out to Jacksonville, Florida where the youngster will undergo the revolutionary treatment currently not available in the UK.

Talking exclusively to the Daily Echo, James and Charlotte told how their lives had been torn apart following Alfie’s diagnosis which saw him immediately sedated ahead of major surgery two days later.

Since that cataclysmic moment they say there have been ups and downs while the family were forced to move in to the dedicated Ronald McDonald House based at Southampton General Hospital for months on end so they could be by Alfie’s side around the clock.

The family from Romsey are due to spend two months in the USA, having first celebrated Christmas on Saturday.

In Florida, the youngster will undergo hours of therapy a day for six weeks but his parents, along with his beloved three-year-old brother Harry, are full of hope.

James, 41, said: “It’s amazing – it’s the best that we could have got and we are massively grateful.

“We’re going to try and make it into a holiday because Harry has been amazing throughout this.

“We have both said how well he has dealt with it. He knows Alfie is poorly and he’s spent five months living with us in hospital.”

James added: “Alfie is really amazing and he’s really happy. Every time we take him out everyone says how happy and smiley he is and he’s got his own Facebook page. We have had compliments on it and that has really helped us.”

Charlotte, 36, added: “We didn’t know if he was recognising us when went into the neuro ward.

“To go from normal life to that was unbelievable. I hated hospital before but it’s a way of life for us now.

“It’s not what you expect when you have a baby but that’s the way of it, and over time he got better every day.”

Charlotte told how following a second round of lengthy surgery and a spell in intensive care Alfie soon started to recover.

She said: “Within three or four days he was crawling around on the floor and blowing kisses and giving high fives.”

Despite their optimism the family say they have been through too much to hold unrealistic expectations, and they will be forced to endure an agonising wait to discover if the treatment has been successful.

Even if it is, there is a chance Alfie’s tumour will return,so they are getting by simply by focussing on day to day progress.

Charlotte told how along the way there have been setbacks, not least the news that Alfie’s tumour had returned after his first bout of surgery.

The initial diagnosis was doubly difficult for her after close friend Becci Dadswell, a popular police officer, had recently passed away.

Becci, who studied at Southampton University, died aged 35 – just a month after giving birth to baby daughter Bella.

Charlotte said: “It was absolutely devastating and heartbreaking, and only just the day before Harry had his birthday.

“I was in shock about Becci and to be told that your child has a brain tumour – it was just unimaginable.

“I floated through several days – you can’t possibly imagine it.”

But the couple described how there have been pleasant surprises as well.

After the procedure on February 3 Alfie’s nerves were badly affected and he was struck down with numerous chest infections and high pressure in his brain.

The following month he began to undergo chemotherapy and spent his first birthday in hospital suffering from respiratory problems.

James and Charlotte were told by a consultant that Alfie would never smile again – but to their delight their son has defied the odds.

As difficult as the last 11 months have been, they are keen to look for positives.

Charlotte said: “We have learned to not look too far ahead and we know there’s going to be so many hurdles. It’s breaking it down into sections really, and trying not to look too much at the big picture. We have met some incredible families and we are all on a different journey. We will have different stages at different times and we all help each other. That makes a big difference. It’s lovely to hear people fighting cancer who say Alfie has inspired them.”