LAWRENCE NOVEMBER 2005

Lawrence was a bright happy child with a very wicked sense of humour. In the Spring of 2004 we noticed that he seemed to be having difficulties hearing what was being said to him and assumed that he had ‘glue ear’ since this had not been a problem in the past. In July 2004 he was finally given a hearing test which showed that his hearing was normal – this was when the alarm bells started to ring, as far as I was concerned. Throughout the summer holidays Lawrence did not seem to be himself – he was very clingy and unhappy when not at home. He started to have difficulties relating to friends and began to feel isolated. When he went back to school in September 2004 we arranged for him to see an educational psychologist who was immediately concerned about his lack of comprehension, and organised for Lawrence to have a brain scan. On October 27th 2004 we were given the news that Lawrence had Adrenoleukodystrophy (ALD). A couple of weeks later we were told that he also had Addisons Disease which is commonly linked with ALD and in itself a life threatening condition.

On the 3rd of December Lawrence developed a sickness bug and became very ill. He was taken into hospital and seemed to have made a full recovery the next morning – after fish fingers and chips for lunch (!) we were told that we could go home. I went to get Lawrence out of bed and realised to my horror that he could not walk. As you can imagine, this was a huge blow for us all and was particularly devastating for Lawrence who had been a very active child. The next few weeks were very difficult and Lawrence got quite angry and aggressive. The Round Table ‘Make a Wish’ charity paid for us to go on a four night break to Lapland which was a wonderful break and Lawrence loved being in the hotel pool where he at least had some freedom of movement. 

Lawrence was determined that he would walk again and by Christmas he was able to take a few steps on his own. His bladder became an issue and he would worry that he needed a wee and got very panicky if he thought he might not be able to get to a loo. His finer motor skills had gone and he was unable to write or draw which he found very frustrating.

By the end of January Lawrence’s primary school had found a full time carer to help him at school, and he was able to go back to school.  By this time he was able to walk a couple of hundred yards holding on to me – he never regained the ability to walk on his own. He could crawl around the house and was still able to retain some independence.

LAWRENCE FEBRUARY 2005

By the beginning of March Lawrence was needing quite a bit of help in feeding himself. He was also incontinent. Lawrence was still very aware of his surroundings but seemed to accept the situation he was in and never questioned it.

In the middle of March Lawrence caught another sickness bug which affected his speech and after this bug he was left able to say very few words (‘butthead’ being one of his words that remained intact!). Strangely enough he was still very good at maths and was still able to beat some of his classmates. In March we also started to have dealings with the special school that we knew Lawrence would end up having to go to. At around this time Lawrence lost the ability to crawl and was unable to get himself up and down stairs. However, he seemed to develop an acceptance for the changes to his body and started to develop a completely different personality from the one he had had before. The ‘old’ Lawrence had been quite a shy child – but the ‘new’ Lawrence was very gregarious and loved interacting with people. He quickly found that by making funny faces he could make people laugh and he loved to be the centre of attention. It was really wonderful to see him having so much fun and also to see how much everyone who met him loved him. The next couple of months were probably the happiest of Lawrence’s life – he spent most of the time laughing.

In April Lawrence started to have bouts of pain.
On two occasions he was in so much pain that we took him to hospital.

In mid May Lawrence caught yet another sickness bug. After this he stopped talking altogether and started to have difficulties eating and I had to mash food up for him. At the end of May we were back in hospital with yet another sickness bug. At this stage Lawrence started to take morphine to try to help with the pain.

By the beginning of June the eating and drinking was a major problem and Lawrence had lost a lot of weight and weighed only 19kg. Towards the end of June Lawrence went into hospital to have a gastrostomy (feeding tube inserted into his stomach). During the operation the surgeon discovered that Lawrence’s stomach was in a very bad way with a lot of damage and ulcers. Lawrence’s muscles were also rigid and it was very difficult to get any part of his body to bend. He had little control over his limbs though he could move his head.

By this time Lawrence was in special school full time – although he enjoyed the facilities there he really missed the interaction with his friends. 

On July 20th Lawrence started being sick again, and a couple of hours later I noticed that he appeared to be having a slight fit. This continued for several hours. We agreed that it looked likely that Lawrence was approaching the end of his life and that we did not want to take him to hospital. He continued vomiting and having fits throughout the night and all through the next day and night. On Friday 22nd July the district nurse came to see us and agreed that Lawrence was unlikely to survive. She then phoned the surgery who sent a GP to our house. The GP was with us when Lawrence died at home at 6pm.

LAWRENCE APRIL 2005

Peter and I feel enormously proud of Lawrence. He endeared himself to all those with whom he came into contact. He showed incredible courage in the face of all his difficulties, very rarely complaining. Despite the pain and incomprehension of his condition he still managed to laugh until close to the end. He enriched the lives of so many people who took him to their hearts.

You can shed tears that he is gone
Or you can smile because he has lived.

You can close your eyes and pray that he’ll come back
Or you can open your eyes and see all he’s left.

Your heart can be empty because you can’t see him
Or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday.

You can remember him and only that he’s gone
Or you can cherish his memory and let it live on.

(adapted from a poem by David Harkins 1981)