Bearsden school boy Ethan’s silence is golden for charity group

Ethan Kennedy'05/03/12
Ethan Kennedy'05/03/12

CHATTERBOX Ethan Kennedy has set himself the ultimate challenge - to stay silent for THREE hours on Saturday to raise money for a charity which helps sick babies.

Ethan, a pupil at Baljaffray Primary in Bearsden, felt compelled to do something after he heard about the plight of friends of his family who had a baby born with a rare condition.

The couple both carried a gene which meant that their son had spinal muscular atrophy, commonly known as ‘floppy baby syndrome’.

He was diagnosed at seven months and quickly became very ill, requiring to be fed with a tube and put on a drip - often babies with this disease don’t survive past infancy.

Ethan (8) is going to zip his lips from 7am to 10am in his home with his mum, Rebecca, and her best friend as adjudicator. His fundraising total has already reached £800 and all the money he’s raised will go to the Jennifer Trust which offers free information, emotional support and practical advice to anyone affected by spinal muscular atrophy in the UK.

Chatty

Rebecca said: “Everyone who knows my son knows he can’t be quiet for love nor money!

“He is very chatty - he even talks and laughs in his sleep so this is going to be very hard for him.

“I’ve told him that if he even makes a peep he will have to hand all the money back.

“I’m incredibly proud of what he’s doing and the charity is blown away by it.”

The caring young boy has also put his name to a letter to the Queen, the Prime Minister and Health Secretary Nicola Sturgeon asking for genetic testing to be made law.

In the letter, Ethan says: “I am going to do a sponsored silence for a baby who is very, very sick and his parents are very sad. I have been working hard to raise money so that other babies can maybe live and get a cure.

“Before people have a baby they should get tested to see if there are any problems with their genes so that babies don’t suffer and mums and dads know what’s inside their bodies.”

Spinal Muscular Atrophy (SMA) is an inherited neuromuscular condition that specifically affects nerve cells in the spinal cord - the lower motor neurons.

Approximately one in 6,500 babies born have the condition which means that about 100 new cases are diagnosed each year in the UK.

Ethan would like to thank everyone who has donated cash to him, including all the local businesses. If you’d like to support him go to www.jtsma.org.uk/EthanKennedy