THE parents of a severely disabled Newport toddler face an anxious wait after applying for their son to have a major operation to help him eat.
Casey Hard, 20 months, who was born with severe epilepsy, cerebral palsy and spastic quadriplegia faces at least a six month wait to be seen by doctors in Wales.
His parents Anthony and Nahella Hard, who live in Coedkernew, have be fundraising for specialist equipment for the youngster since Christmas.
Casey suffers from painful spasms and seizures and recently began choking on his food, which until now he has been able to take orally.
A video fluoroscopy, which is an X-ray involving food laced with barium to show where it goes, revealed he was breathing food and fluid in and doctors initially recommended a naso-gastric feeding tube.
But the youngster struggles to keep the throat tube down and doctors agreed for him to be fitted with a stomach 'peg' or gastrostemy which would enable him to be fed directly into his stomach.
"The tube would mean Casey would be in distress and would make his day more stressful when he is already struggling with massive seizures," said Mrs Hard, 33.
"His reflux is worse with a tube and it is an absolute nightmare. Casey wasn't born with a tube straight in and it's not something he is used to, it would be life-changing for him."
Earlier this month the couple sought help in the private sector, but struggled to find doctors performing paediatric operations privately and applied directly to Great Ormond Street Hospital which has shorter waiting times.
Now the family are waiting for an initial consultation with NHS doctors in Wales after they agreed to the operation.
"It is a long waiting list and it is a long time for a life-limited child like Casey," said Mrs Hard.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules hereLast Updated:
Report this comment Cancel