I would like to tell my story as the Mother of a sufferer.
It all started on Christmas Day 2004, when my daughter Kirsty was 14 years old. She was taken ill with what appeared to be a stomach bug. I booked an appointment at our family doctor’s, and indeed a stomach bug was diagnosed.
Although we followed our doctor’s instructions things did not improve, so it was back to the surgery. Kirsty’s blood was tested but nothing showed up. At this point she was starting to get tired very easily and falling asleep in school, so once again it was back to the doctor’s. I was told to keep her off school and let her sleep it off. Apparently it was a virus taking its toll.
On the 31st March 2005, after I picked her up from school, we were travelling behind a bus when Kirsty said she could not read the number plate – it was all blurred and double. That was it! I drove straight to Alder Hey Children’s Hospital. By the time we got there parts of her body had become numb and her vision was deteriorating. To me it looked as though she had suffered a stroke.
A scan that night showed some inflammation on the brain. I was told they didn’t know what it was and it needed more investigation. Kirsty was put on steroids. It was horrible to see my baby suffering and to feel so helpless – after all I’m a mum and we make our children feel better.
The following morning we were sitting at her bed when five doctors approached and asked if they could have a private chat. I knew the news was not good. They told her Dad and me that they thought it was a brain tumour. I went to bits; this couldn’t be happening. They thought Kirsty should know but I insisted they were not to tell her. After all how do you give your baby that news? I couldn’t approach her bed without the tears flowing and I did not want her to see the concern in my face. Her Dad knew he had to be the stronger one and went straight to her. When I composed myself and approached her, she asked, ‘What’s wrong mum? Why have you been crying? Am I going to die?’ It was heartbreaking. I am so glad we did not tell her what the doctors’ thoughts were as the following day once again they came to see her. This time it was good news; it was not a tumour, but still they were not sure what it was.
After numerous tests including a lumbar puncture, they diagnosed ADEM (Acute Disseminated Encephalomyelitis). I must admit we were all pleased it was not a tumour. I felt that we could deal with anything now. I, her Dad and her older sister Emma spent weeks in hospital, taking turns to stay overnight with her. I have to say that for my family, as we lived near to the hospital, we were able to cope with the obvious issues of fitting in work and day-to-day life, but for those who live further afield I can only imagine the distress and hardship suffered by them. This is yet another reason, in a long list, why this charity and support campaign is necessary.
The steroids eventually took effect and after several weeks in hospital, Kirsty was finally discharged.
Then the following year, more or less to the exact date, we were back at Alder Hey with a second episode. I’m a ‘need to know’ person and I knew you could not get ADEM twice. I also knew that it was very similar to MS. The new diagnosis was MS.
Kirsty was nearly 16 by then, and in the grand scheme of things, technically an adult, so she was transferred for treatment at the Walton Centre, Liverpool. Dr Boggild was Kirsty’s MS neurologist, along with the MS nurses, with Kerry Mutch being one of them. Treatment was started. Rebif was the first drug but it didn’t work. Next it was Mitox which kept Kirsty symptom-free for two years. At the end of that ever-so-brief period of calm there was yet another relapse. This time Copaxone was prescribed, but it didn’t work. Then we got the new drug Tysabri. Kirsty was still receiving Tysabri when she had yet another relapse. This time, within 24 hours, she lost the sight in one eye – and the next day both her eyes were affected.
I would like to mention at this point that Kerry her MS nurse (whom we had grown close to) had informed us, a couple of months prior, that she was leaving us and was going to work within something called NMO. Little did we all know that we would be, shortly, following her. This was when we met Dr Anu Jacob, the NMO specialist, who explained what they thought was happening this time. It was all new to me: I had never heard of this disease.
Subsequent treatments showed that the prescribed steroids had hardly had any effect, so next it was a plasma exchange. It was not a nice procedure, but thank God it worked and Kirsty regained her sight after eight weeks. It was a horrible time for all of us. She was discharged a few weeks before her 21st Birthday and was able to go away to the Dominican Republic to celebrate it with her boyfriend.
So the new diagnosis was NMO. We were told also that the MS drugs had made the NMO worse. I searched the Web to find out more on this cruel disease and must admit I came across some scary sites. I then came across a Facebook group which was a worldwide NMO group. I found this to be a great way of communicating with people who understood, gave support and imparted knowledge. This prompted me to start up a UK Facebook group, to see how many people had been diagnosed in the UK. We now have 125 members.
Right from the start, Kirsty has not wanted to read or know about her illness – after all she was only 14 when it all began, and I understand her reasons. She is 24 this year and living a stable life with her partner.
NMO is very rare disease and so not a lot of people, even in the medical sector, know of it. We need to raise more awareness of this cruel condition and eventually, I hope, arrive at a position where we can fund ethical research into its cure, including easing the existing condition for sufferers. We are some way away from this goal at present, owing to the costs associated with research, but we intend to leave no stone unturned in our long-term efforts to reach our objective. This was the driving force and the main reason why this charity was a dream of mine for many years. It is overwhelming to finally be here…..