Boy, 5, takes first steps after experimental drug shrinks huge tumour that was spreading through his body
Drug has stopped spread of tumour and Alfie has been weaned off pain medicationThe drug is more commonly used as an anti-rejection drug for kidney transplant patients'It gives us hope', say parents



15:52 GMT, 10 July 2012

A five-year-old boy has taken his first steps – after a 'miracle' drug helped shrink a giant and deadly tumour that was raging through his body.

Alfie Milne has a growth spanning his entire right leg, pelvic area, bowel, part of his stomach and lower spine.

It is so big that surgeons are unable to remove it, and until recently he could only get about in a wheelchair.

But after taking an experimental drug to
treat the incurable condition – which is through to affect just 500
people worldwide – Alfie has been given a new lease of life and last
month he took his first steps.

Alfie Milne


Collect photo of Alfie Milne in Great Ormond Street Hospital in 2010

New start: Alfie Milne is now walking after an experimental drug stopped a tumour from growing in his body. He was diagnosed with a rare lymphatic disease at Great Ormond Street Hospital in 2010 (right)

His mother Tracy, 39, from Aberdeen, said: 'It’s amazing. The difference was almost overnight.

'He went from being a child who spent most of his time on the sofa because he was in so much pain, to a very happy little boy who loves being in the thick of it.

'He wants to play football, wrestle, bounce on the trampoline, and climb trees. He sometimes forgets he’s not able to do all these things but he still wants to give it a go. Nothing stops him.'

Alfie was diagnosed with lymphangiomatosis, a rare and invasive disease caused by a malformation of the lymphatic system, when he was just 18 months old.

It has also left him with brittle bones and his blood does not clot properly, which causes internal bleeding. But against all odds, Alfie’s condition has seen a marked improvement since he started taking trial drug Sirolimus. He no longer has to visit the hospital every week.

The drug is more commonly used as an anti-rejection drug for kidney transplant patients, last September.

Mrs Milne, who also has son Lewis, nine, said: 'As far as we are concerned it’ s a miracle drug. I can’t believe how happy and healthy Alfie is today.

'He is getting stronger every day. 'We’ve been able to wean him off all his pain relief, an MRI scan showed the tumour has reduced in size and it hasn’t spread.

'It was spreading really quickly and was going up into Alfie’s spine but it hasn’t gone any further. That in itself is fantastic.

'The ultimate goal is to find a cure but this is a breakthrough. It gives us hope.'

Alfie's mother Tracy

Alfie's mother Tracy (pictured) said: 'This drug is giving Alfie the quality of life he should have'

Alfie was just six months old, when Mrs Milne and her husband Mark, 43, noticed his leg appeared swollen when he was in his baby walker. He was eventually diagnosed a year later at Great Ormond Street Hospital.

Alfie’s right leg remains swollen and is around three times larger than the left one. The disease is also making his right leg grow at a faster rate and it is 5cm longer.

However Alfie, who until recently had to take morphine to combat the pain he was in, has a special shoe with a built-up sole to aid his balance.

Mrs Milne said: 'We’ve got him pain free and balanced and he has been able to take his first steps unaided.

'It was very emotional. He just stood up and said: ‘Mummy, look at me’, and took three steps.

'He even made me keep it a secret from his dad because he wanted to practice before he showed him. My husband shed a few tears when he saw him walking.'

Along with the trial drug, Alfie also takes potent cancer drugs once every seven weeks and steroids twice a day to help his blood clot.

It is hoped his next session of chemotherapy next month will be his last and that in time he will also be able to come off the steroids.

Alfie, at nine months old, before he was diagnosed. His parents were concerned that one of his legs appeared swollen

Alfie, at nine months old, before he was diagnosed. His parents were concerned that one of his legs appeared swollen

Mrs Milne now hopes Alfie, who was five last month, will be able to walk into school, when he starts there after the summer holidays.

She said: 'It’s a major milestone. We didn’t really think he would get to mainstream school or even get to school. “I’m just so happy he is joining in and doing what he’s supposed to at five years of age.

'He’s a cheeky little character who is always laughing and playing with his brother and asking to have friends around. It’s fantastic he can just be a little boy.'

However, they know there is no guarantee that the drug’s success will continue indefinitely.

The family has now set up a charity in their son’s name to help raise money for Lymphangiopmatosis and Gorham’s Disease Alliance Europe.

The organisation aims to fund research for a much-needed cure for the disease, which has a low life expectancy, with only some sufferers surviving 10 years or more.

Mrs Milne said: 'This drug is giving Alfie the quality of life he should have and we’ve got to hold on to that.

'As long as his body can tolerate the toxins the drug produces he should be able to stay on it, hopefully, for the rest of his life.

'But they don’t know what side affects there could be. We just have to take it one day at a time.

'Something like this teaches you not to look too far into the future. We just have to live for today.'

Since setting up Alfie’s Trust at the end of last year, they have raised more than 40,000.

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