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Alison and Harry's story

9th August 2016

Alison’s baby son Harry, from Addlestone in Surrey, went to bed full of smiles and everything seemed normal. But the next morning things were very different – Harry was floppy, pale and his breathing was very slow. It was clear he needed to go to hospital. Alison recounts their story here

Alison and Harry's story

“Harry was 12 weeks old when he contacted meningococcal septicaemia.

“The day before Harry fell ill we went out shopping for the day. I remember him being off his milk and crying so much around the shops that I had to take him home. He fell asleep in the car and had a very long afternoon nap. When he woke up he was happy and was laughing whilst we played. That night he went to bed full of smiles and everything seemed pretty normal.

“During the night Harry woke at 1am with an ear piercing scream. I was unable to settle him and woke my husband up as I was concerned. Harry did eventually settle back to sleep and my husband reassured me that everything was fine, although I still felt the need to watch over him as he slept.

“The next morning we were due to make a day trip to celebrate my Mum’s birthday. Harry had decided to sleep in and as we woke him it became apparent that he had fallen unwell. We were not unable to wake him. His tiny body was floppy, he was pale and his breathing was very slow. He was our first child, so we changed his nappy and tried to wake him but it was very clear that we needed to get him to hospital.

Rushed to A and E

“We rushed to our local A and E, where the doctors and nurses took him straight into a resuscitation room and began to take tests and start him on different treatments. At this point I was still very much in denial. I believed that our little boy probably just had a tummy bug or another minor illness. That day we waited and Harry was eventually transferred to London's Evelina Children's Hospital.

“This was when the rash had started to appear and was covering his feet and hands. Still in compete denial and shock I sat waiting for news. Late that evening we were told the most devastating news. The next 24 hours were critical. They suspected meningococcal sepsis and his chances of not making it through the night were very high.

“At this time Harry was not showing signs of responding to treatment. This is when we were also told that if Harry did fight and make it though he would probably have life-changing effects from the meningitis.

A waiting game

“The next few weeks in intensive care were a bit of a blur but Harry started to make progress. We were told that he may suffer several limb amputations and he was close to losing the end of his nose, but it was a waiting game to find out. Those few weeks of waiting felt like the longest weeks of my life. But his hands and his left leg regained a pulse. An MRI scan revealed a number of ‘changes’ in the brain, which were thought to have affected his sight and hearing.

“After almost three weeks in intensive care we made the decision to have Harry’s right leg amputated below the knee. Neither my husband nor I knew if this was the right action, but we needed our little boy back. As soon as he was back from surgery, he filled us with hope. He smiled; he wasn't in as much pain anymore, although losing half a leg and a toe on the other foot.

From strength to strength

“From moments after the surgery he went from strength to strength and we finally came home! Our ordeal was almost over. I felt as though my little boy needed to walk and talk before I could put it behind me fully and that he did. He started walking at 14 months, passed his sight tests and then his hearing tests. He is now a happy 3-year-old who can run and jump.

“He is incredibly strong and incredibly brave. If someone could have told me in our darkest times that he would turn into the little boy he is today then I would have felt so reassured. He is now on leg number six and the only thing we have discovered that he is unable to do is to wear wellington boots! He can swim, he is part of a football team and he has lots of friends who want a cool superhero leg just like him.

“I never knew meningitis could be so awful, I never knew the effects could be so life changing. I always thought there was a rash. I now know the signs! Harry has a little brother now and we have been lucky enough for him to have the new vaccine!

“It has taken me a very long time to write this story down, over three years now! Somehow, writing it down would make it seem more real. I always read the stories on Meningitis Now’s website and decided that one day I would be brave enough to write my son’s story down. Three years on and I have finally told Harry's story.

“Now, we celebrate leg day every year with a leg cake to remember just how far Harry has come.”