Nicola Grantham, 34, and joiner dad Leon Townsend, 38, couldn’t believe their eyes as their five-year-old son Lennon’s skin ‘stated to slide off’.
Already faced with a number of health conditions, including a genetic disorder, Lennon was then diagnosed with Toxic Epidermal Necrolysis (TEN) and Stevens-Johnson syndrome (SJS) – a rare condition affecting the skin, mucous membrane, genitals and eyes.
It became so severe that Lennon, of Clayton-le-Moors, ‘looked like a burns victim’ and was bandaged from head to toe, with his eyes stitched shut.
It then attacked the lining of his lungs, caused sepsis and left him fighting for his life.
Thanks to staff at Manchester Children’s Hospital, Lennon is now slowly recovering.
Nicola said: ‘What they have done for Lennon is nothing short of amazing.
‘He was very sick as he went into septic shock.
‘Doctors were trying everything they could, but told us to prepare for the worst. That was on the Friday and they didn’t think he would make it to Monday, so we got him baptised.
‘It was the longest weekend of my life. We were just by his bedside praying he would survive.’
During her pregnancy, doctors found that Lennon was missing part of his brain, the corpus callosum, which enables the two sides of the organ to communicate.
Then, after he was born, he had trouble emptying his bowels, his development was delayed and his muscles were weak.
And at 12 months old, he was diagnosed with Mowat-Wilson Syndrome which is a rare genetic condition that causes delayed development, distinctive facial features and an intestinal disorder called Hirschsprung disease.
Nicola, who is his full-time carer, added: ‘He has a colostomy bag, has to be fed through a tube and uses a special buggy to get around. He also has epilepsy, which is linked to his condition.
‘But before this happened, he was sitting up unaided and was able to use a walking frame. He was making such good progress that we were really hopeful that he would soon be walking.’
At the end of August, he developed a temperature and rash but was diagnosed with a viral infection.
‘His blood test results were okay, but this rash just wasn’t disappearing and was still there two weeks later,’ Nicola said.
Following a further trip to the doctor on September 8, Lennon’s carer noticed a bit of skin was missing from his chest.
Then, when his parents tried to lift him from his bed that day, they noticed something was seriously wrong.
Nicola said: ‘We thought maybe he had scratched himself in his sleep but when I lifted him up off the pillow to get him dressed, a big chunk of skin fell off his cheek.
‘His dad went to lift him up and his skin just slid off him. It was awful, it just seemed to happen so quickly.
‘When we turned him on his side all the skin on his back had come off. It looked like he’d been scalded all over his body.’
They rushed him to Blackburn Hospital, medics thought he might have scalded skin syndrome, a painful blistering skin condition.
Lennon’s condition deteriorated and, a couple of days later, he was ventilated so he could be transferred to the more specialised Manchester Children’s Hospital by private ambulance – with his family travelling behind in the car, because of Covid-19 restrictions.
Rushing him straight to theatre, surgeons then took biopsies of his skin.
‘They thought it would be a three hour operation, but it ended up being seven hours,’ said Nicola.
‘They had to remove the skin, wash him in this special solution and bandage him up from head to toe.
‘They said he had 90% and his eyes were affected, so they had to stitch them together.’
Results showed Lennon had TEN and SJS, a rare but serious disorder often caused by an adverse reaction to certain medication, or by an infection, with TEN being a variant of the condition but at the more severe end of the spectrum.
When the SJS spread to his lung lining, he developed sepsis and he was so gravely ill that his parents had him baptised.
Nicola recalled: ‘He has had lots of operations in his short life, because of his bowel problems, so all we could do was be positive and think how much he’d fought and got through before.
‘By Monday he seemed a little bit better and by Tuesday a bit more and the following weekend he was taken off the ventilator.
‘The staff in the paediatric intensive care unit and the burns unit are little miracle workers. If it wasn’t for them he wouldn’t be here.’
Lennon is still in hospital and he continues to have debridement treatment, which removes dead, damaged and infected tissue, once a week and, slowly but surely, his bandages are being removed.
Unfortunately, because he was on the ventilator for three and a half weeks, he has lost a lot of muscle strength, so he is having a lot of physio to try and build that up.
Nicola said: ‘He’s awake and he’s communicating.
‘We know he’s on the right track because he is ‘side eyeing’ all of the nursing staff, as if to say, “Stay away!”
‘He has to have regular eyedrops and will screw his eyes shut as soon as he sees them coming.’
Nicola still does not know if the SJS was linked to a medication he takes or if was simply bad luck.
But despite everything, she says Lennon, who celebrated his fifth birthday in hospital last week, is a happy little boy.
‘He’s always clapping and giggling. The simplest of things bring him so much joy,’ she said.
The family are incredibly grateful to the friends who have set up a GoFundMe page to raise money for them while they are unable to work.
‘We want to thank every single person who has sent messages and donated. It’s made a very stressful situation easier,’ said Nicola.
To donate, visit their fundraising page.
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