Mum Carolyn Jones will be stepping out on a charity walk next weekend to mark what would have been her son’s fourth birthday.
Joshua died in January having suffered a lifetime of disability and illnesses after being born at just 29 weeks.
Carolyn, of Howgill Avenue, Lancaster, will be joined by friends Leigh Simpson and Clare Southworth on the14km St John’s Hospice Moonlight Walk on June 8.
Joshua weighed only 2lb 4oz when he was born, and spent the first weeks of his life in the neo-natal unit at the Royal Lancaster Infirmary (RLI), as well as a stay at Manchester Children’s Hospital after having a cardiac arrest.
He was later diagnosed with epilepsy after suffering several seizures which required resuscitation.
In addition, further tests revealed Joshua was blind, brain damaged and had cerebral palsy.
He also had West syndrome and Lennox-Gastaut syndrome, both of which caused severe seizures.
“He would have up to 40 seizures on a normal day,” Carolyn, 33, said.
“He was in a wheelchair and couldn’t even lift his head up on his own. It was like having a newborn baby – but a lot bigger!”
The last year of Joshua’s life was particularly difficult, with the youngster spending eight weeks in Manchester Children’s Hospital as well as being admitted to the RLI at least once a month due to his seizures and breathing difficulties.
In January this year, Joshua suffered a chest infection and wa staken once again into the RLI.
“We weren’t overly concerned because he had been so many times, but he didn’t pick up at all,” Carolyn said.
When antibiotics failed to work, Joshua was taken to the high dependency unit where he suffered a massive cardiac arrest and sadly died on January 21.
“The whole team who looked after Joshua was amazing, I can’t fault them at all, they did everything they could,” said Carolyn, who has another son, 15-year-old Ryan.
“The Moonlight Walk falls on what would have been Joshua’s fourth birthday and we just wanted to change the day from being sad to being really positive. We will also be letting off four balloons after the walk. We raised £450 for the RLI children’s ward from funeral donations and we hope this will raise money for the hospice.”