£50k fundraiser launched for Edinburgh toddler with rare brain tumour

Dax, 2, needs surgery in the US.

An Edinburgh couple is trying to raise £50,000 for their two-year-old old son who has been diagnosed with a rare brain tumour.

Jonny and Devon Peek have launched a Go Fund Me page to cover the cost of medical treatment in the United States.

They have so far raised £37,500 of the money needed.

Dax is at risk of damage to his hearing and sight.

Dax has been diagnosed with an acoustic neuroma, also known as a vestibular schwannoma, a rare type of tumour which is usually only seen in adults.

The tumour, which is benign, grows on the nerves from the inner ear canal leading into the brain.

Dax’s parents first noticed that something was wrong in early March, as he was no longer able to move the left side of his face or close his left eye. This was diagnosed as Bell’s Palsy, a type of facial paralysis.

Dax's parents hope to raise £50,000.

Later the same month the toddler’s condition got worse, with persistent vomiting and Dax unable to walk in a straight line. After two MRI scans Dax was diagnosed with an acoustic neuroma.

While the tumour is in place Dax risks losing his hearing, as well as damage to his left eye. If the tumour is not removed he may be left with the facial paralysis for the rest of his life.

Worried parents Devon and Jonny joined a support group which led them to a Dr Friedman at UC San Diego Health, the academic health system of the University of California.

They have spoken to Dr Friedman over video call and he has agreed to perform surgery when the family is allowed to travel.

While NHS staff have been ‘amazing’, their advice has been to wait and monitor the tumour, which Jonny and Devon fear may cause long term issues for Dax.

“The NHS staff in Scotland have done such an amazing job, especially in the current COVID-19 situation but they don't have a large enough experience of operating on this tumour in children or to rehabilitate his facial nerve and facial muscles to restore his smile and preserve his hearing,” they wrote on the fundraising page.

“They have suggested to watch and wait, using MRI to monitor the tumour. This could cause Dax long term issues. “After joining a very helpful support group we were recommended a specific Neurosurgeon multiple times.

“Dr Friedman at UC San Diego Health has this well needed experience and knowledge of these kind of tumours. He carries out these procedures in adults but also in young children too.

“Using email and Zoom we sought his opinion, which is to remove the tumour. He has agreed to do the surgery and wants to carry this out as soon as we are allowed to travel.”