Miracle Baby Sam is our little super-hero
A couple from Ashford are raising awareness of a rare health disorder after their son was diagnosed with the condition earlier this year.
On Friday, January 6, Ryan and Ally Phayer took their son Sam to hospital as he hadn’t been feeling well.
It was then that Sam, who is now nine months old, had his first seizure.
Over the following days, Sam continued to have fits and was sent for several scans, where a problem within his brain was discovered.
He was immediately transferred to the Evelina Children’s Hospital in London where he was diagnosed with type 3 of the rare Sturge-Weber Syndrome and put on medication to control the seizures.
However in April, the youngster’s condition deteriorated and he began suffering from hundreds of seizures a day, one every two minutes, where he would lose all muscle control and fall to the floor.
He was rushed to London’s Great Ormond Street Hospital where his condition got progressively worse, until there was no other choice but to operate.
On April 18, the baby underwent a 10-hour operation to completely disconnect and partially remove the right side of his brain.
Mrs Phayer said: “After many discussions with the doctors, and knowing all the risks, we knew it was our only option to give Sam a chance at life.
“The days following the operation were nothing short of horrendous.
“We knew Sam would be left paralysed down his left side, forever partially sighted and would only ever have the use of the left side of his brain, but the reality of it has been 100 times harder to see.
“Days of high temperatures, not being able to feed, his eyes got fixed to the right, he started seizing again. We were told this may happen, but it left us feeling distraught.”
However, on the fourth day after surgery, he started showing signs of progress when he smiled at his parents.
Sam is now nine weeks post-surgery and, although the long-term effects are still not known, he is doing extremely well.
He has recently begun to crawl and is learning to pull himself up and stand unsupported, something that wasn’t thought to be possible so soon, if ever, after his operation.
Mrs Phayer said: “We don’t know how the condition will affect him as he grows up but Sam has amazed us with his strength. He really is a superhero.
“We couldn’t be more proud of our little miracle.”
Sam Phayer, after his operation, and right, with his family, mum Ally and dad Ryan holding his brother George, before he was diagnosed