A mum who feels like she's "going to lose her whole world" is desperately waiting for an organ donor to save her baby boy's life. Jade Jones has been planning her son's funeral while she hopelessly holds out for a heart transplant to keep one-year-old little Louis alive.
It comes as the young boy has spent almost his entire life in hospital, having fallen ill when he was just eight-weeks-old, after a horrifying battle with enterovirus. Now, the 28-year-old mum can do nothing but wait and "take every day as it comes", cherishing each moment and memory with her son.
Jade, from Wigan, said: "It feels like I'm going to lose my whole world. I have spent hours by his bed telling him I need him to get better and that he can't leave me.
"I've had to plan a funeral for my baby, even though he is still alive. His only hope is a heart transplant."
At the moment, Louis is stable and there are other options to support him, such as an LVAD (a mechanical heart), but this is only a temporary fix.
When Louis was three-weeks-old, Jade - who also has eight-year-old Sophia and four-year-old Ellis - noticed that his skin had become mottled and he was struggled to breathe.
She took Louis to Wigan hospital but claims to have been told he had bronchitis, and was then sent home with nasal drops to help his symptoms.
Just four days later, he suffered seizures and was immediately sent to Alder Hey Children's Hospital, where he was put on a ventilator.
"Doctors didn't seem concerned, they said he was fine and that he just needed [to] get over the bronchitis," Jade explained.
"Whilst we were there, Louis stopped breathing on numerous occasions which lead to doctors putting him on a ventilator and transferring him to Alder Hey.
"I was so scared and it was horrible to see him hooked to the machine."
Numerous tests revealed that Louis was battling with enterovirus, late-onset Strep B, meningitis and sepsis, all of which had sadly caused severe damage to his heart.
Enterovirus is a group of viruses which are usually mild, however if they infect the central nervous system, can cause serious illnesses.
Louis' condition continued to deteriorate and he suffered numerous cardiac arrests, leaving doctors no choice but to place him on an urgent organ transplant list.
Jade, who works as a carer, said: "Without a transplant, Louis' prognosis is poor. He's on IV medication for 24 hours a day to help his heart, he can't survive without them.
"It's been difficult and financially draining as I can't work due to being at the hospital.
"My friends have set up a GoFundMe to help me be here with him and my mum and their dad are taking care of my other two children while I stay with Louis."
The tiny tot is now waiting for his life-saving operation and recently celebrated his first birthday in the hospital.
Despite the tough battle, Jade says Louis is "amazing" and loved by the nurses and doctors who care for him.
"Our family take every day as it comes and we cherish every moment we get with Louis," she said.
"He's doing amazing and he's defying all odds, he got that poorly doctors didn't think he would make it but now he is also starting to talk.
"Louis is a happy boy and he loves all the nurses and the doctors and they all love him, every single one of them goes above and beyond for him."
The mum hopes that by sharing her son's story, more people will start putting their names down as organ donors.
She added: "I want my son's story to be shared to help raise awareness for organ donations and show how much they are needed.
"As a mother of two healthy kids, I completely understand why people don't donate, because they don't want to think about their own kids passing away.
"But as a mother going through this, I also understand why organs are so important. I hope I can raise enough awareness to save more lives.
"It will give my son and many other kids a chance of survival and the opportunity to live a normal happy life.
"At the time of his transplant, I will be donating Louis's heart valves to help save another kid's life and to hopefully stop another family going through the pain of losing their babies."
You can donate to Jade's fundraising page for Louis online.
Do you have a story to share? Email nia.dalton@reachplc.com.
