"since 2019, he hasn't been the same."
The parents of a 14-year-old boy are paying thousands of pounds each towards treatment for his potentially life-threatening skin condition.
This has left him unable to live a “normal life”.
Muhammad Bulbulia has always suffered from mild eczema.
In 2019, he fell ill and spent several days at home. However, his parents did not suspect that his skin was the reason for his illness.
His father, Abubaker said: “We thought he was just unwell, we didn’t think it had anything to do with his skin.”
His parents called an ambulance when his condition worsened. They later discovered his skin had developed an infection.
Muhammad was diagnosed with erythroderma – a potentially fatal severe inflammatory skin disease.
As the condition spread, the teenager from Highfields, Leicester eventually lost his ability to live a normal life.
Muhammad was prescribed methotrexate to treat the disease, but his condition did not improve.
Abubaker told Leicester Mercury:
“He had really bad side effects and since 2019, he hasn’t been the same.”
The skin condition causes redness, scaling and peeling which leads to further problems, including struggling to manage body temperature and fluid loss.
Abubaker revealed that his son can barely walk some days due to his hands and feet being badly affected. He also said that Muhammad cannot hold a pen and needs constant assistance.
Abubaker said: “He can barely fall asleep at night due to the scratching that can cause bleeding and weeping from his skin.
“It’s not only affected him physically but mentally as well.”
Muhammad is unable to go to school. He was eventually referred to the Children’s Hospital School.
Abubaker says he is now having to arrange remote learning for Muhammad, who is still unfit to go.
He said: “He’s extremely isolated with the condition.
“We try to encourage him but often he can’t walk much and when he does go out he’s just exhausted.”
The family found some effective treatment after researching online, however, it has taken a financial toll.
The private clinic provides Muhammad with creams and herbal sachets but it costs them up to £1,200 a month.
Abubaker said that he has had to take out loans to ensure he has the money for his son’s treatment.
He continued: “It doesn’t make him completely better, but it’s the only thing that has made a difference.
“But it’s not easy – I’ve got bills to pay as well.”
He has also had to take time off to help his wife look after Muhammad and their younger child.
The family are receiving support from Tree of Hope, running a crowdfunding campaign aiming to raise funds towards his treatments.
Muhammad is currently waiting for his next NHS dermatology appointment, which is due in March 2022.
Abubaker added: “We’re doing everything we can as parents and we just want to be back to doing the things a normal 14-year-old would be doing.”