Kind-hearted pal takes a brave leap to help special baby Feargus

Feargus with his mum and dad Emma and Ronan

Feargus with his mum and dad Emma and Ronan

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A kind-hearted woman did a daring bungee jump from the Titan Crane to raise money for her friend’s son who was born with a very rare condition.

Haleh Tab (22) from Bearsden has raised £700 so far jumping from the 150ft tall crane for six-month-old Feargus Heenan who was born with CHARGE syndrome.

This genetic birth defect only occurs in about one in every 9-10,000 births worldwide.

Feargus has been in hospital since he was born.

He was placed on a ventilator as he couldn’t breathe at birth, and now he relies on oxygen.

He has a congenital heart defect called truncus arteriosus, bilateral cleft lip and palate, colobomas in both his eyes affecting the optic nerve and disc.

Feargus underwent open heart surgery at two weeks old because all his organs were starting to fail.

His airways still collapse regularly and he is blind and deaf.

His mum Emma (25) from Milngavie, said: “I’m very grateful to Haleh for what she’s done - I think she’s very brave.

“I had never heard of CHARGE syndrome until Feargus.

“Unfortunately 30 per cent of kids with CHARGE syndrome die before the age of five due to their complex complications and numerous amounts of medical intervention needed to support them.

“Feargus has a life expectancy of 25 and he will need a lot of medical assistance throughout his lifetime.

“He’s putting up a real fight to be here, he’s very determined and deserves every bit of help.

“That’s why we are raising money to help fill Feargus’ life with anything that can support him through his journey.

“We’ve already bought him a fibre optic river which he loves.

“It’s next to him in his bed and soothes him when he gets upset.

“We’d love to create a sensory corner in our home for him so that he can have pleasurable sensory experiences.

“He’s had such a terrible time so far in his life with so many needles being placed in him.

“He works very hard all the time to breathe, he uses all his muscles, and when he gets upset and cries this makes it worse so it’s important to try to keep him calm.

“We will also need to take Feargus to see the UK’s only specialist in CHARGE syndrome who is based in Birmingham Children’s Hospital.”

Emma and her husband Ronan (28) also have a five-year-old daughter called Evie and a one-year-old son Aidan.

To donate please visit www.gofundme.com/chargeonfeargus and his facebook page is called Chargeonfeargus.