Heather McMaster's story

At 27 years old and having had our first baby we should have been starting to enjoy life as a family, but that was not to be. 

When Adam was five weeks old I was very tired and felt as if I was taking the flu. I really thought I was just worn out from having a new baby and what comes along with that. 

I had a very sore head and ear went to my GP, where I got antibiotics. That night I became much worse and my bladder had stopped working, went to the doctor on call - by now I was in a very bad way and couldn't stop shaking. I was told I was an over anxious mother and sent home with Diazepam for the shakes and told my bladder would most likely be working in the morning.

The next day I couldn't stop shaking and I hadn't passed urine now for 14 hours. I went back to the clinic where they gave me a catheter and again sent me home. Through the night I lost the power in my legs and was burning up and was taken to hospital by ambulance. 

The first day they thought I had an infection related from childbirth, but I was going downhill much too quickly, so a lumbar puncture was done and it was confirmed as meningitis. By now I had lost the power in my whole body - the only thing I could move were my eyes - and I was rushed to the Royal in Belfast, the only thing I remember on the way was the noise the wheels were making as there was a lot of snow on the road. There a brain scan was carried out and I had a lot of fluid around my spinal cord; my family were told if it reached my brain I would die, so the next 24 hours were touch and go. I was given a blast of steroids and more antibiotics.

I don't really recall much over the next few days only I couldn't move anything and I was very scared. Another brain scan and lumbar puncture had to be done to see if the fluid had moved. The neurology doctor told the family it hadn't gone any further so that was good news, but he was unable to know at this stage if I would be paralysed. The blood tests were back and I had meningomyelitis, a very rare form of meningitis that attacks the central nervous system, and there were only five other known cases of it in Great Britain. 

After four weeks when it was decided I should go home this scared me, as now the baby was nine weeks old and I was going home paralysed and would need round the clock help. It was arranged that I would have a care team to do everything for me. Going home was hard and I was very down, but, with the help of good family and close friends, we all got by. 

Over the next year I gradually learned to walk; it was a long, painful depressing year. I felt I had been robbed of the first year of my baby's life as I did nothing with him - did he even know I was his mum? But then you have to remember all those families who have lost their loved ones to this awful illness and it makes you look at it in a different light. 

I still have a lot of problems but I am here and have been blessed with two more children - something I thought would never happen again. 

My family help every year with the local street collection; when something like this hits your own doorstep you look at everything in a different light. 

When I am down I have to remember the good support that my family have been to me - I couldn't have got to where I am today without them. 

Let's just hope a breakthrough will be found soon and much better awareness is needed, and also it affects adults as well as children: this is one thing my family found when doing the street collection -most people thought it was only babies that could get it!! But any age can as I know. 

Heather McMaster
May 2009