‘Christmas has come early’ for Millwall-mad Harvey Brown after new drug gets go-ahead

Admin (26 November, 2015) Health

The Bermondsey boy is due to get life-changing treatment in the New Year

2479Harvey's ultra-rare condition will only get worse as he gets older

 

Christmas has come early for a Bermondsey family after it was announced that a Millwall-mad six-year-old will get the life-changing drug he needs to live a longer, happier life.

The News has been backing Harvey Brown’s campaign to get the medication he needs on the NHS since May.

This week mum Vikki and dad Dean said all their wishes had come true when the National Institute for Clinical Excellence (NICE) announced it would be recommending Vimizim be offered to sufferers of the ultra-rare disease, Morquio.

“Me and Dean have been saying it’s the only thing we want for Christmas is for them to say ‘yes’,” said Vikki, 46, who got the call when Harvey was in surgery earlier this week, having plates fitted to his knees to help his legs grow straight.

 

Harvey after his operation earlier this week

Harvey after his operation earlier this week

Harvey Brown

“I was in shock,” said Vikki, of Galleywall Road. “It still hasn’t sunk in. It’s just brilliant news. It’s like Christmas has come early.”

Morquio is an inherited illness caused by an enzyme deficiency, which means Harvey’s skeleton will not develop properly. His organs will continue to grow but his weak bones won’t and he is likely to develop heart disease and breathing difficulties, while losing his vision and hearing.

There is no cure for Morquio, and, untreated, patients rarely live beyond their twenties.

Vimizim will help children like Harvey and the 77 other children in the UK with Morquio, to grow and develop stronger bodies, walk more easily, hang on to their vision and ultimately live longer.

It was licensed by the European Medicines Agency in April last year but families like the Browns have been fighting since then to get it offered on the NHS.

With the help of Harvey’s beloved Millwall and local MP Neil Coyle, the little soccer star has gained support from up and down the country – even West Ham fans have joined in, gathering well over 10,000 signatures on a petition sent to the government.

Mr Coyle welcomed the news of the NICE recommendation, but said he would continue to push to ensure Harvey got access to Vimizim.

“”I’m really glad that the News’ campaign for Harvey has taken a big step forward. We must now fight to clarify who will get help, how agreements for treatment will be reached and to expand access to this vital help for families like Harvey’s across the country,” he said.

When the News first covered Harvey’s plight, Vikki admitted the prospects of getting the drug seemed “a bit grim” as the NHS didn’t even have a policy for considering treatments for rare conditions.

Since then, the fundraisers, petitions, and trips to parliament have been “like a rollercoaster,” according to Vikki, who was waiting to take her “brave boy” home from hospital as the News went to press.

The decision to recommend Vimizim will now be consulted on before it is enshrined in policy in December, with Harvey hopefully able to start taking his new medicine in the New Year.

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