"With each attack, I lose a bit more of him" – says mum on mission to raise awareness on son's rare sydrome
Register for free to read more of the latest local news. It's easy and will only take a moment.
A HIGHLAND mum is working to raise awareness of a rare and “scary” condition she says has turned his son’s life upside down in the past 12 years.
Brandon Gunn (29) was only 12 when he was diagnosed with brain cancer for the first time, after which he underwent surgery and was treated with chemotherapy and radiation therapy.
Five years later, however, he began displaying the first symptoms of SMART (stroke-like migraine attacks after radiation therapy), a rare complication of brain radiation therapy.
His mother Angela said: “He was with my mother up in Brora when it happened.
“He went to bed with a headache, and the next morning he started losing the ability to use his hand. He was on the phone to me speaking away, and then I noticed his voice disappeared.
“Then I heard my mum who had picked up the phone and said that he had just dropped it, but he wasn’t aware he had because he was still holding his hand trying to speak to us.”
The family rushed him down to Inverness for Brandon to be seen at Raigmore Hospital, where they thought the issue was related to a shunt in his brain which had been placed there at the time of the first operation. However, they couldn’t point to what caused the stroke.
It was only when the then 17-year-old was taken to the Western General Hospital in Edinburgh that the radiotherapy team told the family that SMART syndrome had been the cause of the first attack.
Since then Brandon has suffered multiple attacks and was treated for a second brain tumour in 2018. Each episode has affected his mobility, speech, memory and quality of life.
“Every time he has strokes he loses a little bit more,” Angela said.
“It’s not reversible, there’s no treatment for it. He just takes a seizure medication and that’s it. Unfortunately, it’s not going to get any better.”
Angela said that there has been no improvement in terms of research or support to people affected by the syndrome in the years since that first incident, due to the rarity of reported cases and associated lack of awareness of its existence.
A study published in 2021 states that just about 100 cases of this rare syndrome have been reported.
The family has tried to reach out in person and online to support groups to find out more about the condition and to find other people affected.
“I am on a Facebook group called ‘SMART syndrome support group’,” Angela said. “However there are only 45 people, and mostly based in America and Canada, and they are wanting to find out more about this, because there’s still nothing over there as well.
“I tried to get somebody else to come up so that he could meet somebody else that has this condition. But nobody was able to come.”
She added that the lack of research means that there is no targeted treatment for SMART or sufferers like Brandon and his family.
“The attacks just happen for no reason, and it can happen any time,” she said. “The only thing he takes for it is aspirin, because there’s nothing else they can give us.
“There are no investigations. There are no therapies. There’s no rehabilitation.
“I am currently paying for his physiotherapy on the gravity treadmill at the Oxygen Works and that is working well. He can run on it. Obviously it’s extremely exhausting but it’s helped so many people with MS and it is very similar on the same neurological wavelength.
“Hopefully it will help improve his walking, but we don’t know if it will. But when he is there, it’s actually phenomenal for us to see.”
Brandon finds some relief from his daily challenges in gaming – currently his favourite is Grand Theft Auto – and has recently developed an interest in photography.
A recent exhibition in Inverness showed pictures he took as part of a group as well as a selection of pictures taken by photograper Evija Laivina, who met Brandon at a workshop she was leading for head injuries support charity Headway Highland earlier this year. The exhibition ‘Living with SMART’ aimed to raise awareness of the condition.
Brandon said that dealing with cancer was “easy” compared to living with the effects of SMART.
He and his mum often talk with groups about the condition and experience.
“I have to let some people know what’s going on,” she said.
“They have to start looking into this condition because it’s not fair.
“This is really, really serious and I’m sure there are loads of people up here who have this condition and are just not aware of it yet.”
She said that she was delighted with the exhibition.
“I think it’s amazing the way she’s taken the pictures and it really does make you realise how much of a struggle this is for him.
“We are just glad to get people to be aware of it. This is just such a rare, scary thing, because we don’t know what the future will hold.”
