January 2011

John was still in hospital at this stage. He has been in Intensive Care now since before Christmas. Like his birthday before, his presents will remain unopened…….. waiting, hoping. Just like I and the other Lafora parents do on a daily basis. This has been a particularly bad spell for John, probably the worst since this horrific disease took hold. Again he had gone into status due to an underlying chest infection. This time the doctors could not bring him out of it and we were told it looked like the beginning of the end. Gut feelings, Faith, Hope and strong beliefs prevailed. Thankfully, John came home on 14th January.

February/March 2011

John managed to stay out of hospital for the whole of February and March which was fantastic. A lot of his friends 21st Birthday bashes were coming up and although John was invited, it was not possible for him to attend any of them. To be honest, I don’t know if it was because I couldn’t face seeing his friends celebrating in style and knowing John would be sitting in a wheelchair not able to join in the festivities, or I was trying to spare John himself as he just might have been aware that he is not the boy he used to be. Not all was doom and gloom however, as John’s brother Chris came back to live at home. Chris still finds it extremely difficult and is not yet able to be with John for long periods of time. It is a comfort just knowing he is there and I am sure John feels that way too.

April/May 2011

John’s Friends – Kev, Higgins, Chapman, Dean, Etienne, Will, Brown & Dan

John w/Carol, house and garden decorator for John’s 21st

April brought the celebration we were all waiting for. John’s 21st Birthday. A milestone indeed. John and Chris’s sister Lisa came over from Scotland with Garry and their new baby , Lucas John who is absolutely adorable. John and Chris are the proudest uncles going!!! My aunty Joyce and cousin Christine also came over from Scotland to celebrate with us. It was an anxious time leading up to the Birthday as we did not know how well John was going to be and everything had to be last minute. We decided a Barbeque would be the best option and were blessed with a perfect day to hold it. My good friend Carol came on the morning of John’s Birthday and decorated all the living room and garden with balloons and banners. It looked fabulous. Chris organized the cooking and things got underway. Lots of people attended, together with a few of John’s closest friends. It was a joy and a heartbreak at the same time to see his brother and his friends carry John in his easy chair from the house into the garden so he could have pride of place on his special day. I don’t think there was a dry eye in the house. John was well and truly fussed over and you could see by his expressions that he had a truly fantastic day. In the evening when it got dark, we had 21 Chinese Lanterns with personal messages of Hope and Love sent up in the night sky. It was very emotional and I know that everyone present all held the same prayer and thought.

Uncle John & Lucas John

Five days after John’s 21st Birthday he was taken back into hospital with double pneumonia. I have never thanked God so much that John was at least granted health on his Big Day. John was in hospital for 9 days and returned home but only managed 2 days at home before he was once again taken back into hospital, this time with seizures and breathing difficulties. He got out 11 days later and it looked liked things were looking up until he couldn’t cope with all his secretions, had a huge vomit and a couple of days after that he was back in hospital again.

John is still in hospital at the time of writing this diary. He is a very sick boy and in the past few days he has been out of character, in so much as he has been sleeping almost 24 hours a day. He has so much muck coming off his chest. Normally he would be able to give good coughs and help clear it with the aid of suctioning, but it looks like he is just too tired and weak to be able to do this at present. His body is totally flaccid and we are all increasingly worried. Unfortunately, John has also contracted MRSA, pseudomonas and C-Diff which are all super bugs that are very very difficult to clear from the body, especially when the immune system is not strong in the first place.

I don’t know what the next few weeks, or even days are going to bring for John. I can only do what I have always done, keep the Faith and Hope alive and pray that the cure our children so desperately need is only round the corner. Time will tell, but, as I said at the beginning of this diary, time is what we have not got……….

June/July 2011

John rallied round again and finally got out of Intensive Care on 21st June, only to be back in on 3rd July. Things are not looking good for John. It is heartbreaking to keep seeing him going into status only to be carted off back into Intensive Care. As a mother, the feeling of helplessness is overwhelming. To know your child is going through hell and back and nothing you do can prevent it is a feeling and a sadness that has no description. Regardless of what John goes through, he always manages to smile the biggest smile and just seems to accept that this is his path. He finally got out of hospital again on 22nd July. These are always the happiest of days for me, knowing that I can be with him 24/7 and for him to know that I am right there. I know he knows. His eyes speak a million words.

August/September 2011

August and September were good months, with John staying out of hospital. He is having great difficulty however with all his secretions. It is not normal and although the lafora causes excess secretions, this is way beyond that. I am not a medic, but I myself put it down to the super bugs he has inherited along the way. We were getting John out and about as much as we could, taking him for walks as often as possible when the weather permitted. His quality of life is not great but he certainly knows who is coming and going and there is always a smile for everyone.

We held our second Tandem Skydive beginning 28th August, organised again by my dear friend Carol Rafferty. There were over 40 skydivers who took part to raise the much needed funds for Dr. Minassian and his research. This was a great success and the biggest highlight was that we got John down on one of the days so he could see the skydivers. Everyone was so pleased to see him, especially as there were many people risking life and limb to raise the funds and they had never met John previously. It was a glorious day and we all had a great time. I think John got a bit mesmerised though as there were so many people all wanting to speak to him and get photos!!!! John loved being in the taxi and smiled all the way there. His love of cars was still ominent!!

October/November 2011

October continued much in the same vein as the previous couple of months, just getting through the days and trying to make sure John was as happy and comfortable as he could be. There is just so much to do on a daily basis, between the personal hygiene care, medication, constant suctioning, exercises, trying to get out as much as possible and all other general things that have to be done, time just slips by. John very very rarely speaks but has had a few instances where he will say just one word, i.e. NO or MUM but he says them over and over and over, not just for hours on end but for days on end. I honestly don’t know what this is but it is usually the beginning of something that will result in John being taken back into hospital. John is totally dependent for everything. The only thing he can do on his own is smile. That is precious. This again, I feel is enhanced by the huge amount of medication he takes to keep the seizures at bay. That is the saddest part. I feel he could still have some quality of life if the medication ,or at least some of the types of medication he is on could be reduced. We are left with a catch 22 situation, which is trying to keep seizures at bay, which in turn renders John absolutely motionless or reduce the meds and live in constant fear of the seizures. Although for the past couple of months John was seizure free, there have been a few in October. This is always worrying.

November/December 2011

November started with absolute dread with John having seizures nearly every day. He didn’t appear to be particularly unwell and samples were sent off to hospital to check for any infection etc. but nothing was detected. It appears to me that he is getting himself very worked up over all the secretions he has and this is leading to the seizures. Although he is able to cough well, it is just too much for him to bear. We were all just muddling through best we could and I prayed so much that he would not have to go back into hospital. Christmas was approaching and I had decided that it would just be John and I spending the day on our own with no carers, just a lovely peaceful day together, hopefully just chilling on our own. Chris was booked to go to Thailand for 3 weeks over the Christmas period.

Sadly, about a week before Christmas John had been going into status nearly every day and as much as I tried to keep him out of hospital, doing everything humanly possible to keep him at home, I just couldn’t cope with the constant status. I just wasn’t equipped enough to deal with that. I couldn’t believe that he would be spending another Christmas in Intensive Care. Again the doctors called me in to tell me that they did not think John would make it as he was so very ill. He had pneumonia once again. I done what I always do, think positive and pray that he would pull through like he had done previously. I had seen him looking worse.

I had many talks with doctors to see what was best for John. We had discussed once again putting him on a ventilator but the doctors did not really want to go down this road as John’s lungs were very weakened and basically they said that being on the ventilator is just like having his lungs punched from the inside. They also had the fear that he would not be able to come off it. Christmas was once again upon us and my cousin Catherine came over on Christmas Eve to be with us and support us. We spent most of the time at the hospital just caring for John as we would do when he was at home. It was a horrendous time with John being in status practically every waking hour. He was so peaceful when he went into a sleep. Once again, my beautiful son was lying in Intensive Care on Christmas Day. It felt like he had not had a Christmas out of hospital for a long time. The days dragged on and John was not showing any signs of coming out of this horrible nightmare. There was one little moment when he awoke from his sleep and just looked at me so calmly and gave me the biggest smile. He looked absolutely perfect like there was nothing even going on. I looked at Catherine and we were so excited, we really thought he had finally come out of the status. Sadly about 10 minutes later, his poor body started to convulse again and the nightmare continued. Catherine stayed until after New Year and my cousin Christine came over to join us just before New Year. Again, we spent most of the time with John. It was a great comfort to me. We had many more talks with doctors and John was given the best antibiotics to treat his chest infection. However, the seizures just would not stop. I know people say that certain circumstances are a “living hell”, but once you have been down this road, you can truly say you know what they mean. There was no let up. Every waking minute John was having seizures. He was put on infusions of medication that would knock out a herd of cattle, but even this had little or no effect on John.

On the 6th January the palliative care doctor came to speak to me. It was decided that John should, in addition to everything else he was receiving, have a morphine induced drip. The endless days of seizures were wracking his body beyond belief. Heartbreaking just seems like a word to me now as there is not a word invented yet for the feeling a mother has having to watch her child in so much distress. Christine and I were spending the nights in the room with John, one at each side, listening to his breathing and just praying that he would get some respite.

On the 7th January which was a Saturday evening, John took what looked like a real turn for the worst. His face had gone a horrible colour and his breathing was really shallow. It was so frightening. I turned him over on his other side and he picked up again. At the least he was the most peaceful he had been for at least three weeks. Again Christine and I slept by John’s side, listening to his breathing. I got up on Sunday morning, kissed John, had a little talk to him and went to the toilet. It was about quarter to 8 in the morning. The nurses where having change over and I said to the nurse I would do his morning meds as I always did. We came into the room and I went to open the blind. I turned round and let out a scream. I just knew as soon as I looked at John that his fight was over. Christine kept saying it was not possible as she had been counting his breaths when I had gone out the room. I was talking to him and saying his name and as we stood by his side, he took his last three breaths.

John’s world had ended and with him had gone mine.

There is an old saying “Time Stands Still For No Man” but I can definitely say that I certainly feel suspended in it, although the rest of the world is moving on.

My family and friends have been truly amazing throughout this time. My brother John and my sister Fran helped me with the funeral arrangements and Fran stayed on after it was all over for extra support.

Provided by: Alice Morgan