A 16-month-old boy with a rare incurable genetic disease has been given a chance to leave hospital and live with his mum.

Louie Bull, is one of only two boys in the UK known to have the often fatal genetic disease, Spinal Muscular Atrophy with Respiratory Distress (SMARD), which causes his muscles to waste away.

He was staying permanently in St George’s Hospital, in Tooting, and at one point doctors advised his mum Natalie McDougall, 23, formerly of Stonecot Hill but now lives in Mitcham, to remove the ventilation he relies on and to take him to a hospice.

However, Miss McDougall and Louie’s dad Reece Bull, refused to give up the fight and met with a specialist doctor earlier this year who decided on ethical grounds it was right to give Louie a traceostomy on March 14.

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Little Louie when he was in hospital

The operation involves a tube being inserted into his windpipe connected to an oxygen supply and a ventilator to help him breathe.

Louie was deemed medically stable and discharged on July 1 to his mum's new home in Mitcham.

Miss McDougall said: "I didn’t know if he was going to be here much longer or not.

"When they finally told me he was going to have a tracheostomy I was over the moon.

"It is really good news. I was shocked and pleased." 

Louie will be on ventilation for the rest of his life, and has scoliosis, deformed hands and feet and doctors say he will eventually end up paralysed.

Family and friends have been trying to raise money for the expensive equipment Louie needs to help him cope with the disease. A number of events have been held in Sutton and Merton.

A fun day will be held on Sunday, August 4, at the Morden Brook Pub between 1 - 5pm and will feature a bouncy castle, face paints, a cake sale and an auction.

To make a donation to Louie visit actsma.co.uk/home/page/louie.