A disabled 10-year-old boy has written a heartbreaking letter to David Cameron begging him to step in and stop his life-changing medicine being scrapped.

“Friendly and bubbly” Kamal Hoteit, from Tooting, suffers from a rare and debilitating disease known as Morquio Syndrome.

Wandsworth Times:

Kamal, 10, with his mum Suzanne, 29, outside 10 Downing Street on Wednesday

He is one of just 88 people in the UK who have the condition, which can lead to everything from heart disease to skeletal abnormalities and early death.

Kamal, who is just 107cm, has been taking a drug called Vimizim as part of an NHS drug trial for four years, and on a compassionate basis for the last year.

Now NHS England is set to rule on whether to fund the medicine or not. His mum Suzanne Mallah, 29, said if they withdraw the drug his quality of life will seriously deteriorate.

In his letter to the Prime Minister the Smallwood Primary School pupil said: “I have been taking Vimizim for over five years. My breathing has improved, I have more energy and I am still growing a little bit.

“Without this medicine I could die and I don’t want to die. Please, I just want to be normal.

“Shall I stop going to school and find a job so that I can get better and stay alive? Please help me, please.”

Wandsworth Times:

Kamal begged the Prime Minister for help in his letter 

Kamal has had major surgery on his legs and neck and has weekly infusions of Vimizim.

He used to miss every Friday at school to go to hospital for the transfusions, but now his mum administers the drug at home.

Miss Mallah took her son to 10 Downing Street on Wednesday, January 29, to deliver the letter and said: “Before Kamal was on the drug he had two to three hour naps after school.

“His breathing and his lungs weren’t too good. Since being on the drug he’s got a lot more energy, he can take part in afterschool activities and goes swimming on a Saturday morning.

“His lung function has improved as well. His doctor was amazed at how much his lungs have improved since being on the drugs.

“Without the drugs the damage is going to start again in his body. Once the damage is done it’s irreparable.

“There are still patients out there that that haven’t been given the trial. We are one of the lucky ones, but now it’s like it’s going to be taken away from us.

“Kamal is devastated because he knows without medication his life expectancy is about 25. He knows without it he could die. It frightens him. Without it he will deteriorate.

“He’s very friendly and bubbly. Whoever meets him falls in love with him. He’s quite a character.

“I’m frightened and angry. I don’t know what to say – not knowing the future for your children. Knowing that we might out live our children without this drug, it’s not nice.”

Wandsworth Times:

Kamal's mum Suzanne said she was frightened and angry 

Morquio sufferers originally expected to hear the NHS’ decision in December but a legal challenge meant NHS England abandoned their decision making process for people with ultra-rare conditions.

A spokesman for NHS England told the BBC last week that funding for Vimizim was under consideration and a 90-day consultation period was due to start within the next few days. He said decisions on new investments for 2015/16 would not be made ahead of April.

We went to NHS England for comment yesterday and are expecting a statement this afternoon.