A County Durham teen is having to sleep for up to 16 hours a day and is missing out on the sport he loves while waiting for life-changing heart surgery.
Oskar Hama Ameen, 15, from Chester-le-Street, has supraventricular tachycardia (SVT), a condition which can send his heart racing to 250 beats per minute.
The Park View School pupil has now entered Year 11 but his condition has seen his school attendance fall to around 60 per cent as he is repeatedly sent home when he becomes unwell.
His mum Emma Hama Ameen, 44, says the family are now desperate to get him treatment after months on an NHS waiting list.
She says Oskar can sometimes sleep for 16 hours a day because he is so exhausted.
Emma said: “He is now sleeping 16 hours a day sometimes as he is so worn out and it's getting me so worried. He is one of them that you can’t tell is breathing so I put my face up to his to check. I am just absolutely terrified with it all.”
Rugby is one of Oskar's biggest passions, but his condition is stopping him playing properly.
He plays for Consett Rugby Club and returned to training on Tuesday, September 1, after the summer break.
But Emma says he struggled badly.
She said: “Oskar went back to rugby training on Tuesday (September 1) after the summer break and he really struggled.
“The team and coaches have been amazing with him and have said he can help coaching until he gets better but it's not the same for a young lad who enjoys it.
“He was absolutely heartbroken after training and I think it feels like he is losing everything at the moment because he is unwell.”
Oskar is the oldest of three children, and hopes to become a psychologist in the future.
But his mum fears he is missing out on a crucial year of his education.
She said: “His attendance last year was only around 60 per cent at school as he was constantly getting sent home because of him being really unwell. He is now entering Year 11, one of his most important years so we don’t want this to keep happening, we want it sorted so no more of his school is affected.”
The teenager first developed symptoms about two and a half years ago while playing rugby.
Emma said: “He started feeling, while playing rugby for Consett, that he couldn’t catch his breath, or breathe properly when playing the game.”
After moving to Chester-le-Street, his symptoms continued to worsen.
Doctors eventually carried out an ECG before referring him for further tests at Freeman Hospital, where he underwent a 72-hour ECG.
The monitoring showed his heart suddenly speeding up before returning to normal, even while he slept.
He was subsequently diagnosed with Supraventricular Tachycardia.
Emma said: “We were given three options, the first is just to leave it but this can result in further problems or deterioration which we do not want. The second, is medication but this can make you feel really unwell and lethargic, and the third is an ablation operation where they go in through his groin and cauterise the problem area of his heart to stop the problems.”
The family opted for the operation but were told the waiting list could be more than 18 months.
Oskar has now been on the waiting list for around nine months and Emma says his condition has deteriorated.
She said: “In the meantime it is just a waiting game, but in the past nine months of being on the waiting list he has massively deteriorated and become more and more unwell.”
He has been prescribed beta blockers to control his symptoms while he waits.
But Emma says the medication has not stopped his condition from worsening.
She said: “He struggles to play rugby as he can’t run for more than two minutes before feeling sick or unwell. This also because he loves it so much is affecting his mental health.”
The family are now looking at treatment in Belgium, where they have family and friends.
A Belgian hospital has agreed to see Oskar on October 8 to discuss his treatment options.
The initial consultation will cost 210 euros, while Emma says similar surgeries have cost between £5,000 and £10,000 depending on how serious the condition is.
The family has launched a GoFundMe appeal to raise the money.
The appeal says: “We are at the end of our tether and just want him to feel well again.”
It adds that any unused money will go to the local hospital’s cardiac department to help other patients.
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Emma said: “This is what led us to look at more options and because we fairly visit Belgium as we have family and friends from there as this can’t continue.”
She said the family simply wanted Oskar to get his life back.
Emma said: “The club are even internally fundraising at the moment for a trip to America in 2028 when they are all older and it is a worry that he will miss it if this isn’t fixed soon so we as a family just want this sorted.”
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