A cure for John Joseph, the story so far.
As I went into labour we couldn't wait for our precious baby boy to enter the world and into our lives. The first scare was when the doctors went to brake my waters, they found a vessel running through them, that if broke when they burst them would mean our baby would bleed to death, I pleaded for them to save our sons life, they told us this only happens 1 in 50,000 pregnancies. I was rushed to theatre ready for an emergency c section if the vessel erupted, but luckily it didn't and I was able to give birth naturally, we were relieved and our beautiful boy was born on the 16th of August 2014 03.29 am and was a picture of health, we named him John Joseph William Hawkes Axton he weighed 8lb 12oz and he was absolutely perfect and he completed my life. Our lives were perfect for 5 and a half month. Then on the morning of the 23rd of January 2015 I woke up just before 9am and looked at my boy, all down his left side was shaking, his eyes were open but not focusing on anything, I immediately rang 999 and said I thought my son was having a seizure, by the time the ambulance got here his whole body was shaking, his eyes had rolled to the back of his head, his mouth was frothing and he was struggling to breath, I was hysterical looking at my boy I honestly thought he was going to die. It was the most frightening thing I've ever seen. When we got to the hospital he was on oxygen, it took them 1 hour to stop the seizure it was the longest hour of my life. They ran all sorts of test ct scans, spinal tap, bloods all sorts everything came back normal, they told us he had bronchiolitis and it was a simple frebile seizure and it wouldn't happen again, I wasn't convinced and refused to leave the hospital. They kept us in for a week to observe him. We went home and 2 weeks later it happened again, this time his left arm jerked every few minutes for half an hour before his whole body started shaking that lasted an hour. This time they couldn't stop it and had to sedate my son and put him on a life support machine. The critical care team were working on my boy for hours waiting on the paediatric intensive care unit to collect us from the RVI. A doctor came and said he had a water infection and this was likely the cause of both seizures, again I wasn't convinced. While my son lay in intensive care I done some research online and came across dravet syndrome, a severe and aggressive form of epilepsy that starts in the first year of life in an otherwise healthy child. Dravet syndrome has other associated problems with children ending up in a wheel chair and losing the ability to talk. Development slows down in the second year of life. The mortality rate is alarmingly high. There is no cure. I rushed back to the doctors crying and showed them what I found, the doctor said he hadn't even heard of it and in no way thought it was that. I demanded to speak to a specialist. He agreed to start epilepsy drugs but thought this was an epilepsy that he would grow out of. I demanded the genetic test to rule out dravet. They were reluctant but they finally agreed. They told us it would take 6 weeks for our results to come back. 6 weeks went by seizure free, then it struck him again. Again induced into a coma to stop the seizure, 5 hours after been sedated doctors try to wean him off the drugs but he was still fitting so he had to be sedated again till the following day. I was petrified he wasn't going to pull through it. This time another specialist came and agreed with me that he was worried this might be dravet syndrome. He took a week to recover but we finally got him home. 2 days later he started having myclonic seizures 6 in total so I took him back to hospital, they observed him for a few hours and sent us home upping his medication again. A couple of weeks passed, then we got the phone call asking to come back to hospital to see the consultant. His results were back!!! Our lives changed forever. Our son tested positive for the scna1 genetic mutation that causes dravet syndrome. There is no cure for it, children never outgrow it and each seizure they have can kill them. We have to sit and watch our son deteriorate and watch seizures come more frequent with children suffering hundreds of seizures a week, medication fails to work. This is what we are faced with. Dravet syndrome is so rare not even all the professionals have heard of it. We need your help to fund research into finding a cure. We are desperate to see our son have a good quality of life. The charity dravet syndrome UK main goals are, fund research into finding a cure, raising awareness to medical professionals, support families and fund life saving equipment that will alert parents of night time seizures that frequently rob children of their lives! My son is 8 month old and suffered so much already. We have already had so much help from lots of people to fund life saving equipment for us and other families and we couldn't be more grateful. Please donate to help raise funds to find a cure, we are desperate and plead with every single one of you to help us in some way or another, even 50p will help. If anyone would like to fundraise them self to help us please get in touch, we have people doing sponsored runs, and have a fundraising day organised on the 27th of June 11am at newbiggin by the sea promenade and the Coble pub. please come along to support Johns Joseph's Journey.
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Georgina's John Joseph's Journey. Help find a cure.
Fundraising for Dravet Syndrome UK
We fund medical research & raise awareness to help families living with DravetSyndrome
Charity Registration No. 1128289