‘Our boy is one in six billion’
Tot fighting neuroblastoma is first in world to be diagnosed with genetic condition
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.”