‘Our boy is one in six bil­lion’

Tot fight­ing neu­rob­las­toma is first in world to be di­ag­nosed with ge­netic con­di­tion

Sunderland Echo - - Front page - By Kevin Clark kevin.clark@north­east-press.co.uk Twit­ter: @kevinclarkjp

Lit­tle Lu­cas Wilkin is one in six bil­lion.

The Ryhope young­ster is the first per­son in the world to be di­ag­nosed with a re­cently dis­cov­ered ge­netic dis­or­der.

Now par­ents Re­becca Craike and Jor­dan Wilkin hope their lit­tle boy can bring new hope to other chil­dren suf­fer­ing from the con­di­tion.

Lu­cas – who will be two in March – was di­ag­nosed with can­cer neu­rob­las­toma within days of be­ing born.

Doc­tors ini­tially as­sumed the tot had leukaemia and he was rushed to New­cas­tle: “I lit­er­ally gave birth then they moved him to the RVI and I lived there for five months,” said Re­becca.

“We went to the RVI and the day af­ter, they did a biopsy – it came back that it was neu­rob­las­toma and he had a tu­mour un­der his adrenal gland.

“Within a month and a half of be­ing born, he was get­ting chemo, be­cause it was grow­ing that quickly, it was wrap­ping around his kid­neys.” Lu­cas was too young to be given a suf­fi­ciently strong dose of chemo­ther­apy to kill the tu­mour, but doc­tors suc­ceeded in stop­ping it grow­ing, and Re­becca and Jor­dan have been as­sured he will fight it off on his own in due time.

“It started shrink­ing and it has not grown since,” said Re­becca. “When he gets older and his im­mune sys­tem gets stronger, it should go on its own.”

There was an­other shock in store for the cou­ple, how­ever.

Be­fore Lu­cas could have chemo­ther­apy, he had to un­dergo ge­netic tests, and the re­sults re­vealed he had been born with a de­fect of a gene

“The tu­mour started shrink­ing and it has not grown since” RE­BECCA CRAIKE

that makes anaplas­tic lym­phoma ki­nase (ALK) – a pro­tein be­lieved to be in­volved in cell growth.

“They checked and said there was this prob­lem with the ALK gene,” said Re­becca.

“It is a ge­netic de­fect that they knew must ex­ist, but he is the first per­son they have iden­ti­fied it in.”

Now she and Jor­dan hope doc­tors will be able to learn about the con­di­tion from study­ing Lu­cas’ devel­op­ment.

He is not yet walk­ing and has trou­ble sleep­ing, but is bright and alert and his vo­cab­u­lary is de­vel­op­ing well.

“Ev­ery time we go to the RVI, they say, ‘We’re sorry, we just can’t give you the an­swers you want,’ said Re­becca.

“I hope they get the an­swers.”

Lu­cas Wilkin.

Lu­cas at two months old.

Lu­cas was di­ag­nosed with can­cer neu­rob­las­toma within days of be­ing born.

Lu­cas Wilkin with mum Re­becca Craike.

Lu­cas’s fam­ily have been told that as Lu­cas gets older, his stronger im­mune sys­tem will see off his tu­mour.

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