Diary Entry from Alice Morgan:If your child has Lafora, please send us your child's photo and bio. We'd love to represent the many faces of Lafora and your contribution will help.
Lafora Parent Diaries:
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John Sharp: 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
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.
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………. Provided by: Alice Morgan |
