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This mom has relived the “longest weekend of her life" when she had her five-year-old son baptized after a rare condition caused his skin to peel off in chunks and doctors warned he may not survive.
Already faced with a number of health conditions, including a genetic disorder, Lennon Townsend was diagnosed with Toxic Epidermal Necrolysis (TEN) and Stevens-Johnson syndrome (SJS) in September. After his skin “started to slide off" when his mom, Nicola Grantham and dad Leon Townsend tried to get him out of bed.
The rare condition affecting the skin was so severe that he “looked like a burns victim" and was bandaged from head to toe, with his eyes stitched shut.
Lennon's condition attacked the lining of his lungs and then developed deadly sepsis, an extreme reaction to infection.
But thanks to “miracle workers" at Manchester Children's Hospital, the little boy made it and is now recovering with skin “like a newborn baby," according to Nicola.
“What they have done for Lennon is nothing short of amazing. He was very sick as he went into septic shock," she said.
“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 baptized," she continued.
“It was the longest weekend of my life. We were just by his bedside praying he would survive."
When Nicola was 28 weeks pregnant with Lennon a scan showed he was missing part of his brain, as well as finding extra fluid in her womb.
Then, after he was born he had trouble emptying his bowels his development was delayed and his muscles were weak.
At 12 months old, he was diagnosed with Mowat-Wilson Syndrome which, according to the Mowat-Wilson Syndrome Foundation, is a rare genetic condition that causes delayed development, distinctive facial features and an intestinal disorder called Hirschsprung disease.
Despite his challenges, Lennon has always had a sunny disposition, often “clapping with joy" at things happening around him.
“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," Nicola added.
“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."
Then, at the end of August, Lennon's parents noticed he had a temperature, combined with a rash all over his body and he 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 were left reeling.
“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," Nicola said.
“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."
Rushing him to Blackburn Hospital, medics thought he might have scalded skin syndrome, a painful blistering skin condition.
“He was getting really uncomfortable and seemed to be in a lot of pain. They had to drill into his shin to get a line into him for the antibiotics," Nicola continued.
“It was awful to watch. All the nurses and doctors were so upset and concerned about him."
Lennon's condition deteriorated and, a couple of days later, he was ventilated so he could be transferred to the more specialized Manchester Children's Hospital by private ambulance.
Rushing him straight to the OR, 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," she continued.
“They said he had 90 per cent surface burns and his eyes were affected, so they had to stitch them together."
The biopsies revealed that Lennon had TEN and SJS, which according to the NHS is 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.
Worse followed when Lennon was diagnosed with sepsis after the SJS spread to his lung lining leaving him so gravely ill that his parents had him baptized.
“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," Nicola said.
“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 pediatric intensive care unit and the burns unit are little miracle workers. If it wasn't for them he wouldn't be here."
Lennon continues to have debridement treatment, which removes dead and infected tissue once a week and his bandages are being removed.
“It's amazing what they can do. His skin is repairing really well. He looks like he has the skin of a newborn baby now," Nicola said.
“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," she added.
“But 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 said.
“Now we can't believe a couple of weeks ago we were having him baptized and thinking he wasn't going to make it."
Nicola still does not know if the SJS was linked to a medication he takes or if was simply bad luck.
“We don't really know if this could end up happening again, but we just have to be very careful to assess the risk with any medication he takes in the future," she said.
“It's going to be a long road ahead, particularly to get his muscles working again."
Expecting him to be in the hospital for four to six weeks, the mom says it has been terribly painful for his sister, Poppy.
“Poppy is really struggling. We haven't been able to send her back to school, either, as we can't risk her picking something up and then us all having to isolate and be unable to see Lennon," she said.
“She's staying with her grandparents at the moment in a hotel, while Leon and I are at the hospital. There's a lovely park across the road from the hospital, so every afternoon we go to feed the squirrels with her."
“The hospital environment is very intense. There are so many poorly children there, but having her close by has really helped. Seeing her for 10 minutes is like a breath of fresh air," she said.
“She's not allowed in the hospital, but Lennon's bed is near the window, so she can stand outside and wave at him. They are the best of friends and she's very protective over him. She loves to give him a hug, so it's hard that she hasn't been able to do that."
Praising her son's resilience, Nicola described Lennon as a happy little boy.
“He's always clapping and giggling. The simplest of things bring him so much joy," she said.
“He loves music especially George Ezra and Gerry Cinnamon, and singing along to them with his grandad."
“He'll sit on his dad's back in a special backpack and they'll go on walks or climb hills. He loves being in the fresh air," 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 GoFundMe here
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