From Mail Online, By Graham Smith, 11  September 2012 –

A baby who was given just a 3 per cent chance  of survival at birth has beaten the odds  to come home after six months in hospital.

Tiny Jacob Reed has spent every day of his life clinging to survival in  hospital, fighting an ultra-rare condition.

His chances of survival were so slim, that  before he was born doctors told his  mother Pippa Stanley, 26, that she should abort him a dozen  times.

But Jacob fought on and has finally been  taken back to the family home in  Burton-on-Trent, Staffordshire, for the first time.

Miss Stanley said: ‘The doctors all said he  had no hope, no hope at all – but now  he’s home.

‘We were told he had a 3 per cent chance of  survival but as each week passed he just  got better and better.’

Jacob was born with a disease which affects  just one in 3.5million children called  internal and external juvenile xanthogranulomatosis. It is so rare, British doctors  have only seen 30 cases in the last 150  years.

He has been on the brink of death several  times and once even had to be  resuscitated by his own mother.

But now, in spite of doctor’s dire predictions, Miss  Stanley can finally give her son his  first cuddles.

Miss Stanley and her  partner Tim Reed, 32, were overjoyed when they found  out they were expecting twins in September last year, 12 months to the day after suffering a heartbreaking  miscarriage.

But problems became apparent 12 weeks into  the pregnancy and the couple discovered  that one of the twins had sadly died.

The pair feared that the tragedy of September  2010 would be repeated two-fold.

But Jacob refused to give up his chance of  life, something he proved a month later  when his mother’s waters broke.

At 16 weeks, Miss  Stanley’s amniotic fluid began to leak,  prompting doctors’ concerns that his  lungs would not grow without it.

At 25 weeks, she  was rushed to Oxford’s John Radcliffe Hospital, which specialises in premature births.

Doctors there said his chances of survival  were so small they repeatedly advised Miss Stanley to  terminate the pregnancy.

They warned Jacob would be deformed and would  struggle to live outside the  womb.

But on February 29, Jacob was born weighing  just 2lb 10oz and breathing on his  own.

Miss Stanley said:  ‘When we discovered Jacob was still clinging on in the womb, it  was like my miscarried son had sent me a little part of himself back from heaven to say “there’s a bit of me  living on with you”.

‘But then with the amniotic fluid, it was  just a waiting game, every minute, every  second.

‘I was  a ticking timebomb waiting to go off. My life was on a knife edge.

‘Doctors said they would not help him breathe if he  failed to take his first breath. It was  such a difficult time.

‘But  then he did and I was elated, amazed and thrilled. It was like my little, wonderful boy had stuck two fingers up to the  doctors who had not believed in  him.’

Jacob was transferred to Birmingham  Children’s Hospital where he received  treatment on an enlarged liver and physiotherapy on a squashed foot.

However, terror struck when Jacob was just 11  days old after he stopped breathing and  his lips turned blue in his mum’s arms following sedation for  a blood transfusion.

Fortunately, First Aider Miss  Stanley reacted immediately and  administered CPR to her  newborn.

She said: ‘It was the most difficult moment  to deal with throughout the last year.

‘I  gave him the kiss of life. It was an immediate reaction. My little boy needed help and I had air in my lungs and just  gave it to him.

‘I  knew what I had to do and I did it. Him  turning blue in my arms was horrendous.’

A few weeks after he was born, doctors were  stunned when scans revealed Jacob was  suffering from the extremely rare condition JXG.

The condition, which is normally benign,  causes multiple orange coloured lesions to appear on the skin and without treatment  can cause glaucoma and  blindness.

However, in Jacob’s case the lesions were  also growing inside his body, attacking  his blood, bones, lungs and liver and causing jaundice.

Jacob would need five key operations and two  dialysis sessions to survive.

He underwent a lung biopsy, a lymph node  biopsy, laser eye surgery, the insertion  of a Hickman line to administer drugs and two operations to correct  hernias.

Doctors also discovered Jacob suffers from  retinopathy caused by his prematurity,  the same eye condition as Stevie Wonder.

For months, Jacob’s nappy changes and feeds  were interspersed with pediatric care,  blood and platelet transfusions and countless checks and scans.

But in that time he has amazed doctors with  his incredible progress and, still  weighing just 17lb, half of what he should weigh for his age, Jacob has finally come home.

Miss Stanley said:  ‘Having him home is like winning the lottery but 10 times better.  He is gorgeous.’