Mir­a­cle Baby Sam is our lit­tle su­per-hero

Kentish Express Ashford & District - - Helping Others - By Kristina Cur­tis

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

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