Baby who beat death a dozen times

His mum hopes to raise enough money to go to the Peto Institute in Budapest, where children with disabilities are taught special techniques to help them manage.

Baby Jake gurgles with joy as his mum rocks him in her arms.

As she cups his head in her palm, they nestle into one another, heartbeat to heartbeat, locked in a world of their own.

He is the baby she thought she would never see, the son she has nearly lost a dozen times, the child whose life will always be a struggle for survival.

From the moment she saw her son, Roslyn Akehurst felt a love for him so fierce it almost took her breath away.

She kept a diary of those early days and in it she wrote: "The only way I can describe how I feel is to say that I am in love with you.

"You are the first thing I think about when I wake up in the morning and the last thing I think about at night. You are my special little man, such a fighter and so strong. You are my hero. I look forward to us growing together."

Jake was born by emergency Caesarean on June 1, 2001, weighing 2lb 2oz. He was ten weeks early and the doctors would not say whether he would live or die. They just warned Roslyn to prepare for the worst.

Roslyn could have died herself. She had pre-eclampsia, a condition which can be fatal for both mother and baby.

If it develops into eclampsia it can cause violent convulsions and organ failure. Given another 24 hours, doctors told her, they would have both been dead.

She was so ill after the operation, 12 hours passed before she managed to see her son. When she finally saw him, she wrote: "You look like a bird without feathers, so tiny and so fragile - but just perfect."

It was another few days before she could hold him and it would be weeks before she could take him home.

Jake was a longed-for baby, the son Roslyn had always wanted. She was 26 when she got pregnant. When she found out she was having a boy, she cried with joy.

But the pregnancy was a struggle from the start. Roslyn had to wear pads because she was leaking water. At the time she told herself it must be normal, it happened to lots of pregnant women.

It was not until later she realised the water was amniotic fluid, the vital cushion that was keeping her baby alive.

Roslyn, of Old Shoreham Road, Portslade, said: "My instinct was telling me something was wrong but I felt stupid keeping going back to the doctors. I felt like they thought I was making a fuss out of nothing."

When she was five and a half months pregnant, Roslyn's midwife measured the baby's growth and booked an appointment for four weeks later.

When the midwife measured the baby's development then, he had not grown at all. The midwife told Roslyn to come back to the hospital four days later for a check-up. If she had waited that long, she and Jake would almost certainly have died.

"As soon as Jake's dad heard the baby hadn't grown, he insisted we went to hospital. We drove to Worthing.

"That afternoon, they put me in an ambulance and sent me to Portsmouth to have a special scan done. When I had the scan the nurse said: 'There's no water around this baby'. I could see him curled up in a tight, tight ball, like he was cold and trying to protect himself.

"She said, 'This baby needs to come out'. I was expecting her to say tomorrow but she said, 'No, in ten minutes, love'."

The next hour was the most terrifying in Roslyn's life. She still has nightmares about the experience. As they cut into her she sobbed, 'Please let him live, please let him live.'

For 12 hours after the operation the nurses told her to stay in bed. Her blood pressure was sky high and she was not out of danger yet. But Roslyn had to see her son.

"When I saw him, I couldn't believe it. He looked like he had dried out and his skin was hanging off him. He had no fingernails and his ears were completely transparent. He looked like he was just hanging on to life - just."

In the next few weeks, Jake was transferred from hospital to hospital. He spent some time in Worthing Hospital, then the Trevor Mann Unit at the Royal Sussex County Hospital, then the Royal Alexandra Hospital for Sick Children.

At Worthing, Jake was diagnosed with the killer bug MRSA.

On the morning he was 19 days old, Roslyn was told to come to the hospital with her family as quickly as she could. The nurse said his condition had taken a turn for the worse.

"When I got there he was on a table with wires coming out of him from everywhere. In the next hour, he stopped breathing three times and each time the nurse brought him back."

That day, Roslyn wrote in her diary again.

"I thought I was going to lose you today. My whole world would have crumbled.

"Everyone was saying I had to be strong but if anything had happened to you I don't know what I would have done."

For the next few weeks, Jake's life hung in the balance. By now, he had also been diagnosed with haemophilia. The slightest bump would leave him with a terrible bruise. The slightest cut could mean him bleeding to death.

All the blood that had been taken from Jake's body for tests had left him even weaker. He had to have blood transfusions to build up his strength again.

Roslyn later found out she was a carrier of the haemophilia gene, which is passed on from mothers to sons.

From now on Roslyn will always have to keep a blood clotting agent in her fridge. When she goes out, she has to find a way of keeping the clotting factor cold. If Jake has a bleed, he will have to go to hospital for a transfusion. She has to hold him with the tenderest grip to avoid him getting bruised.

The news was another terrible blow to Roslyn, who has now decided she will never have another child.

"If it's a girl she will be a carrier and if it's a boy he might have haemophilia too. I would never terminate a baby and I would never want another child to go through what Jake has been through. It would just break my heart."

But when Roslyn was finally able to take her baby home, she was filled with a new hope.

She wrote in her diary: "We came home today. I can't begin to tell you how happy I am. I can look at you and hold you and kiss you all night now. You are 4lb 8oz and I love you even more than ever."

Six months later, however, Roslyn was rocked by another piece of shocking news. Just before their first Christmas together, her son was diagnosed with cerebral palsy.

"When the doctor told me that, I just felt like it couldn't be true. After everything we had been through, all the fighting he had done. I broke down and cried.

"With the haemophilia, I thought 'Fine, we can get through it'. Then this. I felt like I couldn't cope anymore, like I wasn't strong enough to go on.

"But something took over and I managed to get through it. I started thinking about how I could make the situation more positive. My priority was to make life as comfortable as possible for my son.

"We won't know how bad the cerebral palsy is until Jake is three. He might not be able to talk or feed himself or sit up on his own.

"At the moment he is still on baby formula because he can't swallow. He can't crawl or sit up.

"He is still underweight for a 16-month-old baby."

Because Jake has both haemophilia and cerebral palsy, caring for him is a complicated process.

Muscle spasms mean his body can jerk back violently and if he hits his head it could cause serious internal bleeding problems. Roslyn has to be by his side 24 hours a day.

Now coping as a single parent, Roslyn is desperate to buy the special equipment Jake needs to stay safe.

He needs physiotherapy equipment to help his mobility, special chairs and toys to stop him getting hurt and a sensory light to stimulate him.

But the one thing she really wants for her son is to take him to the famous Peto Institute in Budapest, where pre-school children with disabilities are taught life skills and specialist techniques to help them live a more active life.

"If I went with him to the Peto Institute, I could learn physiotherapy techniques which would make so much difference to his mobility.

"It's a two-week intensive course but it costs thousands and thousands of pounds. I am determined to raise the money but I don't know where to start."

From the day Jake was born, Roslyn has done her best to stay positive. It has been incredibly hard but she is determined to stay strong.

"I don't look to the future anymore. I don't think about Jake's first day at school or his first steps.

"I just take every day as it comes - and try to focus on the things I can change and accept the things I can't."

Anyone who would like to help send Roslyn and Jake to the Peto Institute or contribute to Jake's specialist equipment fund should send cheques to Jake Akehurst at 320 Old Shoreham Road, Portslade.

Alternatively, send donations c/o Baby Jake's Fund, Sally Hall, The Argus, Argus House, Crowhurst Road, Hollingbury, Brighton, BN1 8AR.