Boy diagnosed with rare condition that causes his skin to fall away

A mother said she had her five-year-old son baptized after a rare condition caused his skin to fall off and doctors warned him he could not survive.

Lennon Townsend has faced a number of health problems, including a genetic disorder. In September he was diagnosed with toxic epidermal necrolysis (TEN) and Stevens-Johnson syndrome (SJS).

The diagnosis was made after his mother, Nicola Grantham, 34, and carpenter father Leon Townsend, 38, said his skin had “slipped off” when they tried to get him out of bed.

The rare condition affecting the skin, mucous membrane, genitals and eyes was so severe that he “looked like a burn victim” and was blindfolded from head to toe.

When it attacked the lining of the lungs and Lennon of Clayton-le-Moors, Lancashire developed fatal sepsis – an extreme reaction to infection – worried doctors told his parents, who also have a daughter, Poppy, six, that he was unlikely to pull through.

But thanks to “miracle workers” at Manchester Children’s Hospital, the little boy made it and is now recovering with skin “like a newborn,” said Nicola, who said: “What you have done for Lennon is downright amazing.

“He was very ill when he went into septic shock.”

She continued, “The doctors tried everything they could but told us to prepare for the worst. It was Friday and they didn’t think he would make it by Monday, so we got him baptized.

“It was the longest weekend of my life. We were just by his bedside praying that he would survive. “

When Nicola was 28 weeks pregnant with Lennon and found extra fluid in her womb, a scan had shown that he was missing part of his brain, the corpus callosum, which enables communication between both sides of the organ.

Then after he was born he had trouble emptying his bowels, his development was delayed, and his muscles were weak.

And at 12 months of age, he was diagnosed with Mowat-Wilson Syndrome, which is a rare genetic disorder that causes delayed development, distinctive facial features, and an intestinal disorder called Hirschsprung’s disease, according to the Mowat-Wilson Syndrome Foundation.

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Despite his challenges, Lennon attending special school was always in a sunny mood and often clapped for joy at the things that were going on around him.

Nicola, who is his full-time carer, added: “He has a colostomy bag, needs to be tube fed, and uses a special buggy to get around. He also has epilepsy which is related to his condition.

“But before that happened, he sat up unaided and was able to use a walking frame. He made so good progress that we really hoped he would leave soon. “

Then, in late August, Lennon’s parents noticed that he had a fever combined with a rash all over his body and was diagnosed with a viral infection.

“His blood test results were fine, but that rash just didn’t go away and it was still there two weeks later,” Nicola said.

After another trip to the doctor on September 8th, Lennon’s carer noticed that a piece of skin was missing from his chest.

Then when his parents tried to lift him out of bed that day, they were staggered.

Nicola said, “We thought he might have scratched himself in his sleep, but when I lifted him from the pillow to put him on, a large piece of skin fell from his cheek.

“His father wanted to pick him up and his skin just slipped off him. It was horrible, it just seemed to go so fast.

“When we turned him on his side, the skin on his back had loosened. It looked like he’d been scalded all over. “

Doctors took him to Blackburn Hospital, thinking he might have scalded skin syndrome, a painful skin condition.

Nicola said, “He was very uncomfortable and appeared to be in great pain. They had to drill into his shin to get a line for the antibiotics into him.

“It was horrible to see. All the nurses and doctors were so upset and concerned about him. “

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Lennon’s condition worsened and a few days later he was ventilated so he could be rushed to the more specialized Manchester Children’s Hospital by private ambulance – with his family driving back in the car due to Covid-19 restrictions.

The surgeons took him straight to the theater and 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 from head to toe,” she continued.

“They said he had 90 percent surface burns and that his eyes were affected, so they had to sew them together.”

The biopsies revealed that Lennon had TEN and SJS, which is a rare but serious disorder, according to the NHS, often caused by a side effect to certain drugs or an infection, with TEN being a variant of the condition, but on the more severe end of the line Spectrum.

Worse followed when Lennon was diagnosed with sepsis, a potentially life-threatening condition, after SJS spread to the lining of his lungs – and made him so sick that his parents had him baptized.

Nicola recalled: “In his short life he had a lot of operations because of his bowel problems. So we could only be positive and think about how much he had fought and gone through before.”

“On Monday he seemed a little better and on Tuesday a little more and the following weekend he was taken off the ventilator.”

Nicola added: “The staff in the pediatric intensive care unit and the burn department are little miracles. If it weren’t for them, he wouldn’t be here. “

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Lennon continues to receive weekly debridements, which involves removing dead, damaged, and infected tissue. Slowly but surely, his bandages are being removed.

“It’s amazing what you can do. His skin is repairing very well. He looks like he has the skin of a newborn now,” Nicola said.

“Unfortunately, because he was on the ventilator for three and a half weeks, he lost a lot of muscle strength so he has a lot of physical therapy to build that up,” she added.

“But he’s awake and communicating.

“We know he’s on the right track because he’s looking sideways at all of the nursing staff as if to say: stay away!”

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“He must have regular eye drops and will close his eyes as soon as he sees them coming,” said Nicola.

“Now we can’t believe that we got him baptized a few weeks ago and thought he wouldn’t make it.”

Nicola still doesn’t know if the SJS has been linked to a drug or if he was just unlucky.

“We don’t really know if this could happen again, but we just have to be very careful to assess the risk with any drugs he may be taking in the future,” she said.

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“It’s going to be a long way, especially to get your muscles working again.”

The devoted mother expects him to stay in the hospital for another four to six weeks and says it has been excruciatingly painful for his sister Poppy – who has no health problems – as she could not see him due to the pandemic restrictions.

“Poppy is really fighting. We couldn’t send her back to school either because we can’t risk her picking something up and then having to isolate everyone and not be able to see Lennon, ”she said.

“She is currently staying with her grandparents in a hotel while Leon and I are in the hospital.

“There is a nice park across from the hospital, so we go to feed the squirrels with her every afternoon.”

She said, “The hospital environment is very intense. There are so many poor children there, but it really helped to have them around. Seeing them for 10 minutes is like a breath of fresh air.

“She’s not allowed to go to the hospital, but Lennon’s bed is near the window so she can stand outside and wave to him.

“They are best friends and she is very protective of him. She loves to hug him, so it’s hard she couldn’t.”

Nicola praised her son’s resilience and described Lennon, who celebrated his fifth birthday in the hospital last week, as a happy little boy.

“He always claps and giggles. The simplest thing gives him so much pleasure,” she said.

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“He loves music, especially George Ezra and Gerry Cinnamon, and sings along to them with his grandpa.”

She added, “He will be sitting on his father’s back in a special backpack and they will be walking or climbing hills. He loves being in the fresh air.”

The family is incredibly grateful to the friends who set up a GoFundMe page to raise money for them while they can’t work.

“We’d like to thank every single person who sent and donated messages. That made a very stressful situation easier, ”said Nicola.

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