Rare Condition Causes a Boy’s Skin to Fall Away
A mother said she had her five-year-old son baptized following a diagnosis that he has a rare condition which leads his skin to fall away. As per doctors' warning, he may not survive.
Already experiencing numerous health conditions which include a genetic disorder, in September, reports said, Lennon Townsend was diagnosed with Toxic Epidermal Necrolysis or TEN and Stevens-Johnson syndrome or SJS.
The diagnosis after 34-year-old Nicola Grantham, Lennon's mother, and joiner father, 38-year-old Leon Townsend said, his skin began sliding off when they attempted to get the boy out of bed.
This rare condition affecting the skin, mucus membrane, genitals, and eyes was particularly severe. He appeared as if he was a victim of burns and was wrapped with a bandage from head to toe, with eyes stitched shut, Lennon's parents described.
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Despite this boy’s numerous syndromes, he, who goes to a special school, has always had a happy disposition, frequently ‘clapping with joy’ at things going on around him.
Deadly Sepsis Developed
When the condition attacked his lungs' linings, Clayton-le-Moors, Lancashire-based Lennon then developed what his doctors told his parents as deadly sepsis, a life-threatening response to infection.
However, Nicola said they are thankful to the Manchester Children's Hospital "miracle workers" that their little boy made it and is now, his skin is recovering "like a newborn baby."
What the doctors have done for their child, the mother added, "is nothing short of amazing." Lennon was very ill, Nicola recalled adding, adding, doctors tried everything they could but told them to prepare for the worst.
Lennon's mom also said they were told on a Friday, and they hadn't thought the child "would make it to Monday, so we got him baptized."
That particular weekend Nicola shared was the longest weekend of her life. "We were just by his bedside," she continued and said, "Praying he would survive."
As earlier mentioned, the biopsies showed the child had TEN and SJS, but worse conditions followed when Lennon had developed sepsis. His mom said Lennon had had various operations because of his conditions, including his bowel movement, in his short life.
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The Boy With a 'Happy Disposition' Despite His Syndromes
When Lennon's mother was 28 weeks pregnant with him, and detecting extra fluid in her womb, a scan had presented the child was missing the corpus callosum, a part of his brain which enables the organ's two sides to communicate.
Then, following his birth, Lennon found it hard emptying his bowels. There was a delay in his development as well, and his muscles were weak as well.
Then, at 12 months, Lennon was diagnosed with Mowat-Wilson Syndrome, which, the Mowat-Wilson Syndrome Foundation said, is a rare genetic syndrome, causing the delay in development, distinct facial features, and an intestinal illness also known as "Hirschsprung disease."
Despite his difficulties, Lennon, who goes to a special school, has always had a happy disposition, frequently "clapping with joy" at things going on around him.
The Little 'Miracle Workers'
That said, Monday after they were told about Lennon's condition, Nicola shared the boy seemed "a little bit better," and by the following day, "a bit more," and the weekend after, he was "taken off the ventilator."
The staff in the pediatric intensive care unit and burns unit, the boy's mom, continued, "are little miracle workers" that if it was not for them, their son "would not be here."
To date, Lennon continues undergoing debridement treatment, which takes out dead, damaged, and infected tissue once each weak, and slowly but surely, his bandages are also being removed.
Nicola expressed how amazed she feels about what the doctors and everyone who attended to their child can do. Lennon's skin, she describes, is repairing quite well.
Unfortunately, though, since he was on a ventilator for more than three weeks, the boy has lost a lot of muscle strength, and thus, he is experiencing a lot of "physio to try and build that up," his mom explained.
The good news is that, according to Nicola, "Lennon is awake and communicating." They know he is on the right track, she added, "because he is 'side-eyeing' all of the nursing staff," seemingly telling them to "stay away!"
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Oct 26, 2020 10:00 AM EDT
