A grieving mum who is still mourning her son's death a year on said the "world crumbled" when she faced the tragedy. Toddler Jaxon Robotham, who had complex medical needs, died on May 27 last year.
But for mum Kaytee Jones, the pain of losing her three-year-old child "does not get easier with time". The qualified nurse, from Arnold, said she used to feel guilty for being happy or even smile.
"I did not think that I could ever smile without him. I felt guilty for laughing at my friends' jokes", she added. "But life does not allow you to stay in one place. You have to pick yourself up."
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It was shortly after his birth that he was found to be different to other babies, suffering from a "list of diagnoses". Jaxon's Congenital Cytomegalovirus was believed to be the cause of two cysts in his brain.
He also had 1p36 deletion syndrome, a rare chromosome deletion known to cause disabilities, among other complex issues. The toddler also had problems with his heart and kidneys.
"I was at uni when I got pregnant with him, in my last year", the heartbroken mum said. "I thought I would start working and travelling, and just juggling everything. I was looking forward to it."
But instead, Ms Jones became her baby's full carer, documenting their journey through a well-read blog. "We basically lived in a hospital, it just became our normality," she said.
"It was just me and him, travelling to London for hospital appointments. I was constantly feeling like I was fighting for his rights. It was a love that I never knew would have existed. He was my family."
Asked if she ever thought about becoming a mum again after Jaxon's death, Ms Jones added: "I am just scared that I will never feel like that ever again. Because no one will ever be as unique as him."
Against all the odds, Jaxon was described as a "happy, bubbly, loving, funny" child. "You would not necessarily believe that he had the diagnosis because he was progressing and doing so well. He just proved that disability does not define a person's quality of life", she added.
"He brought so much happiness into my life. I would be absolutely exhausted and drained - and then he would just smile and made everything okay. He was my little bundle of joy. He was my purpose. And then, it has just like my whole world crumbled."
When Jaxon was three months old, his mum was told that the baby was at high risk of a cardiac arrest at any point in his life. "If he made it to a year, it was a good sign for the future."
Ms Jones said she truly believed that they were going to live a long and happy life together. "I had his life in my hands from very early weeks. The main thing was keeping him alive. He just became so charismatic, he powered through everything."
Jaxon's story documented by his mum gained sympathy from followers around the country. At his funeral, more than 100 people watched as a horse-drawn carriage carried the toddler from the BBC island to Trent Bridge on June 25 last year.
In honour of the bubbly toddler, Ms Jones has now set up a charity event which will take place on Jaxon's 5th birthday, on August 19. She said Jaxon was loved around the world, with thousands following his journey.
The £80 tickets to the charity ball, which will start at 6pm at the Colwick Hall Hotel, will include prosecco on arrival, a three-course meal and entertainment throughout the event. An auction will also take place, and the money will be donated to Rainbows Children Hospice.
"I knew it would be a day that I would dread, to have a birthday without him. Last year I just got the family together", Ms Jones said.
"I just thought that for this year I would make it bigger and better. It is for a cause, and it is a way to celebrate life."
