Family raise funds to help little Louie's fight against SMARD

Family raise funds to help ill baby's fight

Louie Bull

Louie with his mum and dad

Louie Bull

Louie Bull

Louie and mum Natalie

First published in News Sutton Guardian: Photograph of the Author by , Chief reporter covering Wandsworth

Smiley little Louie looks like any other 11 month old tot - except he is the only boy in the UK with an incurable and often fatal genetic disease.

Three girls in the UK are also known to have the rare and very serious condition, Spinal Muscular Atrophy with Respiratory Distress (SMARD), which causes muscles to waste away.

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.

Now his parents are trying to raise money to help pay for the expensive equipment Louie will need in the future to help him cope with the disease.

Louie was born to Natalie McDougall, 22, and Reece Bull, from Stonecot Hill, who both happen to carry a mutation - which affects only one in 500,000 people - and causes SMARD.

He was born prematurely however he was a normal, happy and healthy baby boy. It was only when he got to five months old when his feet dropped his parents and medics realised something was wrong.

Miss McDougall, who has taken a trip to Nottingham to meet a little girl also suffering from SMARD, said: "Usually they will pass away really small - other cases I have read about they pass away at about three months.

"[Doctors] want me to take Louie to a hospice and remove ventilation - but he’s such a happy little boy.

"But there’s no way on earth - he’s a bright and happy boy. It doesn’t affect their brain at all.

"But because of his serious condition he won’t get any better and there’s no cure.

"I can understand from a medical point of view. But he’s my little boy."

Miss McDougall has an appointment on March 8 with a specialist doctor who can advise whether or not Louie should have a tracheotomy - which would enable him to live at home with his parents.

There is no cure for SMARD and very little is known about it.

Louie's family have already got on board friends from Slimming World in Morden Park Baptist Church to help raise money for Louie's equipment and they also held an event in Leatherhead at the weekend which raised nearly £1,500.

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

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