Parents in shock after discovering son has same brain tumour as his twin brother

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A couple are still reeling from the news that their seven-year-old boy has the same brain tumour as his identical twin brother.

Chris and Wendy Watkins already knew one of the twins, Riley, had hypothalamic hamartoma, however they have now found out that their other son has the same tumour.

The couple first thought Riley was suffering from epilepsy, however they later found out he was suffering from three separate conditions – rare disease moyamoya, a brain tumour and gelastic seizures, which cause giggling fits.

The youngster had to endure 18 hours of brain surgery when, just after his fifth birthday, he appeared to suffer a stroke, reports Hull Live .

Riley Watkins was originally thought to have epilepsy however he was actually suffering from three separate conditions

 

The family, from Cottingham, near Hull, Yorkshire, have now found out that Riley’s identical twin, Noah, also has a brain tumour, although he has not been diagnosed with any of the other conditions.

Chris said: “When Noah had his scan, we honestly thought it would just put our minds at rest that all was well with him, so it came as a shock and was very upsetting that he was diagnosed with the same tumour as Riley.

“Despite all they both go though, whether medical trips and never-ending scans, effects of the diseases or simply being separated, we are so proud that they are both such positive, happy boys who live life to the full.”

Noah had been very poorly last year which led to the scan, which confirmed he had the same rare brain tumour – hypothalamic hamartoma – as Riley and needs to be monitored with six-monthly MRI scans.

“Despite all they both go though, whether medical trips and never-ending scans, effects of the diseases or simply being separated, we are so proud that they are both such positive, happy boys who live life to the full.”

Riley refused to let surgery get him down

Riley also suffers from moyamoya, a very rare condition affecting one in one million people. Essentially it is a narrowing of the blood vessels supplying the brain which causes mini strokes.

Hypothalamic hamartoma only affects one in 200,000. This is a benign tumour in the brain but causes seizures, lasting up to ten minutes and can be a progressively disabling condition.

Chris said: “Both Riley and Noah’s tumours are stable up now but still suffer from seizures on a daily basis.

“In February, Riley woke and couldn’t speak and his movement and eyesight were severely impaired and was like a typical stroke and again we rushed him into hospital where he spent the day going through tests and scans.

“It turned out to be his worst attack to date lasting about ten hours before returning to normal and not a full blown stroke. We were advised he needed an emergency scan with contrast, which we received about six weeks later and are still awaiting the results.

“Both boys are due to see a specialist team at Alder Hay Hospital in Liverpool as they are the centre of excellence for the rare tumours that they suffer from and a specialist from Manchester children’s hospital for the Moyamoya disease.”

Riley also has a thickening of the optic nerve and, while there is no immediate problem, he will continue to be monitored.

Due to the severity of Riley’s moyamoya, urgent surgery was needed. This involved taking the main blood vessel supplying the skin and placing it directly onto the brain.

Riley will have to take aspirin all his life. Also, he will not be allowed to play any sport or activity that gets him significantly out of breath.

But there has been an added concern for Chris and Wendy as Riley’s twin brother Noah has also been getting sick whenever Riley is ill.

Riley and Noah, both seven, may need surgery for the hypothalamic hamartoma but their parents may be forced to go abroad for treatment as the surgery is not yet available on NHS.

Chris said: “The treatment in the UK is not yet available and we would have to go to the US which would costs hundreds of thousands of pounds.

Noah (left) and his identical twin brother Riley in hospital

“We cannot just sit and wait for it to become available here as it could be too late. We have already been in touch with a doctor in Boston.

His parents have now set up the Life of Riley Appeal, which is initially to cover treatment should Riley and Noah need to go to the US but also to raise money for those organisations who have given the family such fantastic support.

Chris is keen not only to raise money but also raise awareness of these rare conditions. However, as it has become apparent they may need funds to get treatment abroad that has become his primary focus.

If for any reason Riley or Noah’s treatment proves impossible or unnecessary, excess funds raised will go towards research into these conditions and to charities which assist children who suffer from these and similar conditions and which support their families.

The boys won the Child of Courage at the Viking FM Superhero Awards on Friday and a number of fundraisers are in the pipeline.

The Life of Riley Party Night will take place at Willerby Manor Hotel, in Willerby, near Hull, on Saturday, July 13, with Wagner from X factor and music from The Voicettes, Andy Cornfoot and The Costellos. There will also be comedy from Paul Connell.

The evening is £25 a ticket and includes a hot buffet. The evening is sponsored Nuffield Health Gym who are donating a pair of full year memberships for the raffle among other prizes.

A dinner with Rugby Union world cup winning legend David Campese will be held on Wednesday, September 11 at Hull Ionians Rugby Club and will feature comedy from Gary Skyner who has appeared on the Jonathon Ross Show.

The evening will feature an auction of sports memorabilia and food for £30 a ticket. The evening will be sponsored by Martin Dixon Ltd.

For more info on these and other events you can visit the  Life Of Riley Appeal website or email lifeofrileyappeal@outlook.com.

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