AGED just seven, Brendan Stones has already had four strokes. And each time, the brave young boy from Grahamstown has fought his way back to health.
Brendan has Moyamoya disease – a condition so rare it is estimated to occur in only one in every 300000 children.
It is a condition in which certain arteries to the brain are constricted, resulting in blood flow being restricted.
“It is so rare in South Africa that there is only one neurosurgeon who has focused specialised training in this disease, Dr Llewellyn Padayachee, and he has operated on only 20 Moyamoya cases in the last seven years,” Brendan’s father Tim Stones, a Tiso Blackstar sub-editor, said.
“Brendan had his first stroke a week before his fourth birthday , when we were living in Worcester.
Stones said while doctors at the time managed to pick up the stroke and treat it well, they had missed its root cause.
“As a result, not quite three years later Brendan had further strokes – one on December 16 and December 26 last year – and then this massive post-surgery stroke, on 27 March.
“This last one is by far the cruelest, paralysing him on his right side, including his bowels, and taking his speech.
Stones said they remained extremely thankful their son was still alive.
“I still have this mental image of him as a little boy running – he is such a fast little athlete,” Stones said.
“Considering the operation lasted close to seven hours, and Brendan bled badly during the operation, requiring several transfusions, we are extremely fortunate to still have our son with us.
“But nothing could possibly have prepared us for the devastating extent of this particular stroke, which has completely changed both Brendan’s and our lives.”
“Padayachee, told us Brendan’s case was the most complex and had the highest risk of complications, including death during and immediately after surgery.
“Brendan had 23 holes drilled into his brain. The usual average for Moyamoya surgery is four to six holes. He was operated on both sides of his brain, with the incision from ear to ear.”
Stones said they would only know in six months to a year – when various scans will reveal whether the new blood vessels have started to develop in his brain – whether the operation was a success.
“If the operation was not successful, our son will still eventually die, with increased strokes ultimately rendering him a ‘vegetable’.
“We can only leave his fate in the hands of our Lord, and pray for a miracle,” he said.
“As a family we are indebted to the hundreds of people around the world who have sent messages of support and are praying for us as a family.
“Many have also generously donated to our family’s support fundraising site online, set up by a mutual friend, which assists us in meeting the huge medical bills that have arisen.”
Brendan’s mother, Lisa, who has been sleeping by his bedside since his surgery at Cape Town’s Red Cross Children’s Hospital in March, said they hoped to get him mobile.
“He is a precious, precious child. He loves swimming and his puppy,” she said.
Stones said his son had a strong fighting spirit.
“He is always smiling and he laughs most of the time. And even if he can’t say the words he insists on talking to us. He wants to be understood and be part of everything.”
- A fundraising initiative for Brendan can be viewed at : https://www.youcaring.com/BrendanStones
Brave seven-year-old boy battles rare brain disease
Brendan has Moyamoya disease – a condition so rare it is estimated to occur in only one in every 300000 children.
It is a condition in which certain arteries to the brain are constricted, resulting in blood flow being restricted.
“It is so rare in South Africa that there is only one neurosurgeon who has focused specialised training in this disease, Dr Llewellyn Padayachee, and he has operated on only 20 Moyamoya cases in the last seven years,” Brendan’s father Tim Stones, a Tiso Blackstar sub-editor, said.
“Brendan had his first stroke a week before his fourth birthday , when we were living in Worcester.
Stones said while doctors at the time managed to pick up the stroke and treat it well, they had missed its root cause.
“As a result, not quite three years later Brendan had further strokes – one on December 16 and December 26 last year – and then this massive post-surgery stroke, on 27 March.
“This last one is by far the cruelest, paralysing him on his right side, including his bowels, and taking his speech.
Stones said they remained extremely thankful their son was still alive.
“I still have this mental image of him as a little boy running – he is such a fast little athlete,” Stones said.
“Considering the operation lasted close to seven hours, and Brendan bled badly during the operation, requiring several transfusions, we are extremely fortunate to still have our son with us.
“But nothing could possibly have prepared us for the devastating extent of this particular stroke, which has completely changed both Brendan’s and our lives.”
“Padayachee, told us Brendan’s case was the most complex and had the highest risk of complications, including death during and immediately after surgery.
“Brendan had 23 holes drilled into his brain. The usual average for Moyamoya surgery is four to six holes. He was operated on both sides of his brain, with the incision from ear to ear.”
Stones said they would only know in six months to a year – when various scans will reveal whether the new blood vessels have started to develop in his brain – whether the operation was a success.
“If the operation was not successful, our son will still eventually die, with increased strokes ultimately rendering him a ‘vegetable’.
“We can only leave his fate in the hands of our Lord, and pray for a miracle,” he said.
“As a family we are indebted to the hundreds of people around the world who have sent messages of support and are praying for us as a family.
“Many have also generously donated to our family’s support fundraising site online, set up by a mutual friend, which assists us in meeting the huge medical bills that have arisen.”
Brendan’s mother, Lisa, who has been sleeping by his bedside since his surgery at Cape Town’s Red Cross Children’s Hospital in March, said they hoped to get him mobile.
“He is a precious, precious child. He loves swimming and his puppy,” she said.
Stones said his son had a strong fighting spirit.
“He is always smiling and he laughs most of the time. And even if he can’t say the words he insists on talking to us. He wants to be understood and be part of everything.”
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