The parents of a baby boy who died weeks after being born prematurely have set up a charity in his memory.
Jackson Bullock fell ill just 12 days after he was born six weeks early in March.
After showing signs of improvement the brave tot became ventilator dependent and died from a suspected muscle and nerve condition on May 2.
His devastated parents Lucie Clarke and Jack Bullock, both 21, said Christmas was too painful to celebrate and instead have set up the Baby Jackson Appeal to support families in similar situations.
Lucie, from Leyland, said: “Jackson was taken to theatre for two biopsies in which the results are still outstanding.
“The doctors came to me and my partner Jack on May 2 and advised us that even though they didn’t know the diagnosis of Jackson that in only a short time his body will give up. Me and Jack had to make the hardest decision we will ever make, this was to withdraw Jackson’s care on Sunday May 5.
“At 3pm Jackson’s care was withdrawn he didn’t attempt to breath. His heart gave up 20 minutes later and he was pronounced dead at 3.20pm.
“After fighting for 60 days it was his time to be left in peace.”
She added: “Jack found it very hard – as his mum I knew what was best. As hard as it was I knew it was time for him to go.
“It was awful, I was the strongest person out of all the family, I knew what was right.
“I knew how poorly he was. At first I didn’t, I thought they were lying.
“Looking back at photos from when he was born to the three days before he passed you can see how tired he was.
“Every day with him was perfect, we didn’t know any different. To me going to the hospital every day was normal.
“When it was over I got up the next day and didn’t know what to do. The routine had gone. I brought him home the night before his funeral and he stayed at home.”
Lucie said: “I’m now setting up this charity to raise as much money as possible to do more research in finding out a cure so no other mummy and daddy lose their child like we did.
“It’s the only thing that is keeping me going. Doing this charity for him is his name living on.
“I just think if I wasn’t doing this I don’t know how I would feel – it would be like it was over forever. If I don’t do something for him, that is it.”
Lucie wasn’t planning on celebrating what would have been Jackson’s first Christmas this year. She said even small things like bonfire night were so difficult because last year she had been planning to take her son to a fireworks display.
“I would like to help people in my situation,” she said. “We had a couple who came to see us the day before Jackson passed. They lost their son and it was comforting. It didn’t make it easier but it was comforting.
“The first project we are taking on is at Preston neonatal unit. We are decorating the waiting room to make it more comfortable for other parents, children and visitors.
“We are hoping to find the cause that has kept Jackson from us and from that we could help other parents who are in the same position as us.
“I want to help the neonatal unit – they were absolutely fabulous, it’s like they were his family.”
The Baby Jackson Appeal works under the umbrella of charity Rock FM’s Cash for Kids.
In October Lucie and Jack were joined by their friends for a sponsored walk to Blackpool to raise funds.
The trust’s first charity fundraiser was the Colour Run in Manchester in July.
To support the cause visit: www.justgiving.com/babyjackson