Lennon Townsend has a rare medical condition that causes his skin to fall off whenever he is touched by anyone.
Five-year-old Lennon Townsend has been diagnosed with a strange medical condition which is said to be so severe that his skin falls off in chunks.
In September, his Mum, Nicola Grantham, took him to Blackburn Hospital, suspecting he has a rash.
The doctors at the hospital told the worried mum that Lennon had a rash, which is viral and probably should sort itself out.
However, Nicola started noticing that Lennon’s skin falls off whenever she picks him up. She also observed that he has some skin missing from his chest.
According to the medical experts Lennon has been diagnosed with the worst form of Stevens-Johnson syndrome (SJS) which is Toxic Epidermal Necrolysis (TEN).
This disease condition begins with flu-like symptoms which spreads later around the body, looking like painful blisters.
Nicola revealed that she felt terrified when she went to get him and discovered there was a piece of skin missing from his face.
She also said when she picked him up, she noticed that his skin will fall off.
His Mum took him to the doctors at Blackburn Hospital who immediately dived into the situation.
Originally the specialists thought it was Scalded Skin Syndrome and placed him on antibiotics, believing it was just a viral issue that should be cleared in a few days.
Lennon Townsend has to be sedated often to ease the pains from the Stevens-Johnson Syndrom.
As Lennon Townsend’s situation grew worse the decision was made to transfer him to the Royal Manchester children’s hospital from Blackburn after consulting with the Manchester Burns Unit.
Moving him was not easy. The burns team had to sedate him before they could move him because he was in extreme pain.
At Manchester, the specialist doctors had to peel off Lennon Townsend’s skin to prevent infection, a process referred to as debriding.
Nicola acknowledged that when the skin kept peeling off, the doctors how to change the diagnosis from Scalded Skin Syndrome to something more serious.
She also said did debriding process left her son looking like he was badly burnt. He is presently well-ventilated and could breathe well.
Lennon is being sedated to reduce the pain. His condition is so serious that it has affected the lining of his stomach.
For now, the specialist doctors theorized that Lennon’s strange skin condition could be a reaction to one of the drugs he was taking.
They have also decided to swap the drugs in the short term to see if his condition improved, as well as hoping that the reaction stops.
Specialist doctors had to stitch Lenin’s eyes after it was affected by the strange skin reaction his body had 90% surface burns.
His eyes and mouth are regularly checked for infection to avoid further complications for now.
In September the Medics had a tube fitted in Lennon Townsend to provide him with milk.
The parents of the patient said the doctors, for now, cannot tell whether the medication was the cause of this rare problem. Hence Lennon is daily being closely observed.
His situation is further compounded by the fact that he is nonverbal and could not communicate what he is going through to anyone.
The family of Lennon Townsend family remains positive in the face of their son’s rare medical conditions.
An optimistic Nicola said she is staying positive and that Lennon has a wonderful team of doctors and nurses who not only look after him but also the whole family.
“They’re from all different departments – neurologists, dermatologists, plastics surgeons, physios, burn physios, dieticians, and more.
“It’s really good because they all come in at once as a team with their findings which re-assures us and stops information being lost in translation.
“The poor nurses in their full PPE too. Lennon loses a lot of fluid so they have to keep them warm with heaters all the time and the nurses come in in all their gear.
“They must be boiling! I really can’t thank them enough for all they’ve done. It’s been like a military operation to look after him and I’m ever so grateful.”
Lennon Townsend has a six-year-old sister Poppy who is at home due to COVID protocols. There are also fears, if she contacts the Coronavirus, she could spread the dreaded flu to her brother. She hasn’t been able to visit him.
Nicola said: “There are no words to describe how I feel the fact that they’ve taken it upon themselves to do this for us and also with all the well-wishers from all over the world.
It’s not all doom and gloom for us, we know a lot more about Stevens- Johnsons syndrome now.
“There’s not a lot of info out there but I’m learning and hopefully they can identify which medication has caused this if it is that.
Lennon Townsend suffers from several medical conditions for which he is being treated such as epilepsy and Hirschsprung disease.
His mum says:
“I don’t blame anybody for this as if it is a reaction he could have had one at any time.
“Lennon isn’t the only child in this situation, he might be the only one with his condition, but in the ICU we’re all in it together.”
Kind-hearted and sympathetic individuals groups and organizations are reaching out to the family to assist, especially now that the family stay in hotels and eat out due to constant medical appointments.
Lenin has received donations within and outside the United Kingdom but more assistance is needed for this inspiring young boy to be back on his feet again, go to school, and play around like other kids of his age.