This is our beautiful, brave boy Nathaniel. He is just about to have his first birthday, something we didnt think we would be celebrating together as a family.

Nathaniel entered the world on 3rd May 2018 and brought with him so much happiness and joy. They say you have never felt love until you have held your child for the first time, and they are right. After the last year I can also say you have never felt a love that hurts so much than when you're told you may lose your child. We have thought long and hard about asking people to help us with raising funds, but ultimately this could mean we could give our child a better quality of life, for the time he has with us as Nathaniel has a life-limiting illness.

Nathaniel was born a happy healthy baby boy. He smiled from morning until night and was just beginning to roll over when his first seizure hit at 14 weeks old. This seizure could not be stopped via conventional seizure medication or rescue medication as its known. The doctors had no choice but to put our tiny baby into a coma to stop the seizures. I thought my world had come crashing down, but unfortunately that was just the beginning. That coma was just 1 of 3 comas our son was placed into for seizure control. One of them comas lasted for nearly 3 weeks. The longest 3 weeks of our lives. Nathaniel was also christened during one of his comas as we didnt think he would pull through.

We then spent a further 3 months in hospital, and by the time we came home Nathaniel had lived over half his life in hospital and mainly in intensive care. During that 3-month period he endured more pain and suffering than most would in a lifetime. He had numerous tests from brain scans, EEGs, lumbar punctures, muscle biopsies. The list is endless. A lot of the pain was also caused by a string of pharmaceutical drugs that have horrendous side effects. He spent a total of 6 weeks being infused with ketamine. At first we were hopeful that Nathaniel had an infection; at least this could be treated and the seizures would stop. Then we got the blood results and they were clear. We were then told that it could be a structural problem with his brain. This scared us beyond belief. The way to fix this would be surgery, then his brain scans came back clear. We then had an anxious 2-month wait for genetic testing. We knew this diagnosis would be the worst for us, as the prognosis would not be good. As our consultant walked in to the room that day, the same as he did everyday, I knew before he told me that they had found something and I knew it could not be cured. We were told that Nathaniels severe epilepsy was likely to be caused by a mutation they had discovered in his NARS2 gene. It was a mitochondrial disorder and a degenerative disorder that was only going to get worse. The skills he had developed are no longer there and he can no longer support his own head. Thats when our world really came crashing down. We were told it was all about making memories now with our boy.

On the 1st October 2018 we did receive some hope. Nathaniel was the first child in his hospital trust, to our knowledge, to receive Epidiolex an approved medical cannabis via the NHS but it only contains CBD. His seizures started to reduce slightly and he responded well to this drug, however, it did not last long. Nevertheless it was an improvement and made us look into medical cannabis further as a treatment and thats why we had to take him to a private doctor because full extract cannabis oil, although legal, is not prescribed via the NHS. We have seen such an improvement in Nathaniel from full extract medical cannabis that we need to ensure we can continue to pay for his prescription. With Nathaniel being so poorly and doctors estimating that he will not make it past his infancy its essential we keep him comfortable and carry on improving his quality of life

We are fighting hard for an NHS prescription, but we know this will take time, time we do not have. Therefore we took Nathaniel to a private hospital in May 2019 and he was given a private prescription costing £2500 a month. It was worth every penny as his seizures reduced. In fact although he still has seizures everyday his major, immediately life-threatening seizures have completely stopped! Since last year we have been on an incredible journey with Nathaniel who is now more happy and alert. He is certainly more comfortable and has a much better quality of life. Fortunately we now use a new importer and it costs us around £1300 a month, however, this is still more than we could ever afford. This is where all you gorgeous lot come in! You have helped us fundraise to keep our boy well and we could never thank you enough. A special thanks to the the Charlie Gard Foundation too. They have helped our family not just financially but emotionally.

Over the last year we have tried our best to secure an NHS prescription along with many other amazing parents from the End Our Pain Campaign group and I love them all dearly. We have lobbied the government, met with many MPs, campaigned and taken part in NHS reviews and we will continue to fight for our boy because a year ago we weren't sure if he would be here to fight for, and yet here he is still fighting so we will too!

We will keep pushing for change.

Thank you for taking the time to read our story your support gets us through the dark days.

Lots of love xxx