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Toddler battles 'one-in-a-million' cancer
5:02pm Wednesday 21st August 2013 in News
A BRAVE tot who is overcoming a one-in-a-million form of cancer has been banished into darkness by his own immune system due to an allergy to the sun.
Two-year-old Leighton Brownrigg, from Stourport, has been diagnosed with photosensitivity - the abnormal reaction of skin to light and sunlight.
The condition means he is not allowed to go outside and even has to cover up every inch of his body and wear high strength sun-cream when in the house.
The diagnosis is a cruel blow as the toddler is recovering from a rare form of leukemia called Juvenile Myelomonocytic Leukaemia (JMML), which affects just one in a million children worldwide.
Since having a bone marrow transplant, little Leighton has been left with no immune system, which doctor believes could have caused his Photosensitivity.
Scorching temperatures recently have left the youngster suffering and caused his skin to severely crack and split, leaving him with agonising blisters.
His devastated mum Zoe, 22, said: “He is not allowed outside at all. He can only travel early in the morning or a night time but only in a car with tinted windows and air con.
“I have to keep the curtains at home closed and the blinds shut.
“I have to cover him up as much as possible because it is so hot and cover him in factor 50 plus sun cream even when he is indoors.
“He is living in darkness.”
Ms Brownrigg has to apply factor 50 plus sun cream to Leighton six times a day and bath him twice a day to prevent his skin from flaring up.
But his symptoms have persisted and he regularly has painful itchy rashes and sores all over his body.
The single mum said: “His skin will change colour from white to red. He is constantly scratching or picking his skin.
“It is very painful for him and he gets very agitated. He looks out the window and wants to play outside. He gets upset when he sees other people outside and he is locked up indoors. How do you explain to a two-year-old they can’t go outside - it is heartbreaking. I get really upset.
“I can’t take him out to keep him entertained. It is really hard. I have to rely on other people to get me a loaf of bread and things like that as I need to keep him indoors 24/7. The only time I leave him is when I go to work.”
He is undergoing daily tests at Birmingham Children’s Hospital, where he is currently receiving treatment for his leukaemia. He also has to go to Rotherham General Hospital every two weeks for two days for specialist treatment using ultraviolet light, called Extracorporeal Photopheresis (ECP), which could make make his Photosensitivty even worse and leave him needing special sunglasses.
Leighton was diagnosed with JMML in February last year and after waiting six months underwent a bone marrow transplant in August 2012.
Ms Brownrigg had rushed him to hospital the previous November after a meningitis-type rash appeared on his body.
Since the transplant, he has been plagued with health problems, including chronic Graft Versus Host disease, a complication which is associated with bone marrow transplants which has left him dependent on steroids.
His spleen and liver also ballooned to 15cm - triple the normal size - meaning the toddler was not able to crawl or roll over when he was younger.
Ms Brownrigg, a carer for dementia sufferers, added: “Leighton has no immune system. He has had 17 chest infections since the transplant.
“It feels like everything is getting worse at the moment. Everything that can go wrong has gone wrong but we have to just get on with it.
“It is only me and Leighton. You just have to carry on. I don’t believe in crying. I get angry with myself when I get upset.”
She is now fundraising so she can buy a new car which has tinted windows and air conditioning so she can transport Leighton to and from the hospital without his skin flaring up.
She has set-up a Facebook page called Leighton’s Fight, which has received hundreds of ‘likes’ and support from people.
Talking about Leighton, Ms Brownrigg added: “He has always been really sociable and is so laid back. His bravery amazes me.”
Dr Mark Velangi, consultant oncologist at Birmingham Children's Hospital, said: “About one to two percent of children with leukaemia have juvenile myelomonocytic leukemia (JMML).
“JMML mainly affects children younger than four years old, with the average age being two years old.
“It is a difficult cancer to treat. It is often resistant to chemotherapy, so bone marrow transplantation is currently the best therapy available.
“Leighton has had a bone marrow transplant, which went well and his leukemia is in remission. He now has graft vs host disease of his skin, which is a recognised consequence of the transplant.
"This results in red, itchy and flaky skin which has been sensitive to the sunlight. This has not been responsive to standard treatments and he is about to commence a new treatment called ECP (extra corporeal photophoresis) in a hospital in Rotherham. Despite this, his leukaemia remains in remission and overall we’re very pleased with his general progress.''
His bravery has been recognised by staff at the hospital, who have made Leighton one of the faces of its £4 million Children’s Cancer Campaign Appeal to improve the hospital.
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