Celebrity football match will return to Northampton to raise money for Duston charity Archie's Army

Six-year-old Archie Kambanis of Duston has a rare muscle-wasting condition called Spinal Muscular Atrophy (SMA). His mum, Kay, is now calling for a potentially life-changing drug to become available on the NHS. Credit: Kirsty Edmonds.
Six-year-old Archie Kambanis of Duston has a rare muscle-wasting condition called Spinal Muscular Atrophy (SMA). His mum, Kay, is now calling for a potentially life-changing drug to become available on the NHS. Credit: Kirsty Edmonds.

Cobblers stadium is gearing up to welcome two teams packed with celebrities this April all in aid of Duston lad, Archie, who has a rare muscle-wasting condition.

Six-year-old Archie Kambanis has a rare condition called Spinal Muscular Atrophy (SMA), which he was diagnosed with when he was just two.

Tickets are on sale now for this years celebrity football match.

Tickets are on sale now for this years celebrity football match.

His mum Kay, who is among the one in 40 people to hold the gene, was told his muscles would eventually shrink and die, but his brain would remain unaffected.

This April, celebrities including Love Island's Alex Bowen and Jack Fowler, Calum Best, Eastender's Jake Wood and Dean Gaffney will take part in a charity football match at the Cobblers' ground to raise money for Archie's Army and NTFC community trust.

Kay said: "The fact Archie's Army is the chosen charity for this year's celebrity soccer is overwhelming.

"Being a parent of a child with a life limiting condition is often a lonely place.

You can buy tickets from NTFC website.

You can buy tickets from NTFC website.

"We have so many people behind us on Archie's journey, which is an amazing feeling."

SMA is a life-shortening condition where the motor nerve cells in the spinal cord become diseased, which causes a decline in physical strength. As a result, walking and eating become difficult and a simple chest infection could be fatal.

Although there is medication abroad available to treat Archie’s disease, overseas one injection of the drug Spinraza would cost Kay about £75,000 every four months for the rest of his life.

At the moment Archie uses a wheelchair to get around and attends physiotherapy sessions, which costs £70 once a fortnight. He also has hydrotherapy sessions once a week, with a £85 price tag.

Kay added: "Last year Archie and his army raised an incredible £26,000 to buy Archie a new powered wheelchair. Archie's new chair is due to be handed over to him during the last week of January.

"Archie's Army continues to raise money, which is held in a special account for him, meaning he can access on-going private therapy, equipment and home adaptations to ensure he can live the most independent life possible.

"With the treatment for Spinal Muscular Atrophy on the horizon, it is also crucial that his fund is kept topped up so we can afford to travel to Euorpe to access treatment if it does not become available here in England."

The youngster has undergone hamstring lengthening surgery to enable him to continue using specialist equipment to stand and has scoliosis, a dislocated hip and tilted pelvis.

Due to the disease progressing Archie cannot walk, stand, crawl or get from a lying to sitting position on his own.

Kay hopes one day Archie, who has type 2 SMA, can access this medication, not yet available on the NHS, for free.

Last year the charity match welcomed 3,700 fans in aid of child cancer charity Niamh’s Next Steps, which was set up in 2013 after the death of five-year-old Niamh Curry, who died battling neuroblastoma.

PICTURE GALLERY: Niamh's Next Step celebrity charity football match at Sixfields Stadium

Tickets are now on sale and are priced at £10 for adults and £5 for under 16s from ntfcdirect.co.uk.

Mascot and other pitch side packages are on sale, for more information email christine.clark@ntfc.co.uk.