A MUM whose four-year-old son has spent most of his life in hospital battling a terminal illness is celebrating after finally being able to bring him home.
Caelan Bluck, from Haydock, has a rare condition called Infantile Pompe disease, which is a genetic muscle weakness caused by the build up of complex sugars. Most people with the condition do not survive past a few months old.
The brave little fighter, who cannot sit up or walk independently and is fed through a peg in his stomach, has spent most of his life at the Royal Manchester Children’s Hospital.
Despite being declared as stable at the end of 2018, he has had a long journey to finally get to permanently live and be cared for at home with his loving mum Toni.
However, last week he was finally allowed to do just that.
Toni, 23, said: “We entered the hospital on June 22, 2016 and left on February 6, 2020.
“Caelan has caught many infections in hospital and has been no stranger to intensive care. This is one of the reasons it took so long for discharge, as well as the hoops I had to jump through and the many challenges we had to face in hospital including him having a tracheostomy.
“Since the tracheostomy was put in place he hasn’t been to intensive care in over 12 months. Some days were really dark but some were incredible. We made so many good memories.
“Obviously we’ve been home for home leave but as soon as I left that hospital with my son on February 6 it felt different, on the journey home I was so at peace that I’d finally made it.
“It feels great and like a massive weight has been lifted off my shoulders.
“Caelan has separation anxiety and cried every night when it was time for me to leave to Ronald McDonald House.
“Now I can just put him in bed and get on with my house work. He’s happy reading to his carer. There’s no more tears. The next step now is to get him into his school.”
Toni started a Facebook page called Caelan’s Journey to the Stars, documenting his life through pictures, posts and stories.
The page has more than 7,500 followers and Toni credits these followers with helping her through the darkest times. Toni says she was wary about going public with their story but the love and support from strangers has been overwhelming.
She added: “The support from Caelan’s page has been incredible. We’ve had so much support and Caelan has received so much love and so many gifts, birthday cards, Christmas cards and even get well soon cards.”
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