independent

Friday 18 April 2014

Brave Ryan (6) will fly to US for life-saving treatment

FRIENDS rallied around a heartbroken mother as she prepared to travel to America with her son, who needs life-saving treatment.

Six-and-a-half-year-old Ryan Caulfield-McCormack and his brother Ethan (4) have been diagnosed with a rare inherited disorder made famous through the 1992 film 'Lorenzo's Oil'.

Ryan and his mum, Caroline, will fly to Minnesota in the US so that the schoolboy can get a bone marrow transplant as he fights the disease.

Ethan will also need the operation shortly while Ryan's twin, Jack, does not have the rare genetic disorder known as ALD or Adrenoleukodystrophy.

Caroline McCormack and husband James Caulfield, who is already in the US, are desperately fundraising so that their children can have the expensive treatment.

The family have health insurance but they will also need up to €3m to cover the cost of the transplants to give their sons the best chance of survival.

The two boys were diagnosed with ALD two months ago after Caroline insisted to doctors that there was something neurologically wrong with Ryan. The youngster wasn't making as much developmental progress as his twin, Jack.

"Call it a mother's instinct but I knew something was wrong. The first time I noticed a problem, Ryan was sitting at the dinner table and staring at a bottle of ketchup. His eye started to go to one side.

"I thought his hearing was an issue and his eye sight but those tests came back fine," she said.

The mum explained to medics that she thought her little boy had suffered a stroke.

Eventually, Ryan was referred to Tallaght Hospital for an MRI.

Last night, Caroline was packing her bags for the US in her family's bungalow in Tramore, Co Waterford, while her friends and family launched a fundraising appeal to 'Save Ryan and Ethan'.

They expect to be in the US for up to six months.

"The day we found out Ryan had a bone marrow match, Jack (Ryan's twin) went up to his brother and said 'Ryan we found a doctor who is going to fix you'.

"He told his brother 'I'll mind you forever as long as I have my brother'."

Caroline urged other mums to look out for the rare condition, as it is difficult to diagnose.

Symptoms include withdrawal, poor memory, poor school performance, seizures, hearing and speech difficulties and loss of sight.

Charity

Prognosis is poor in children as it is a progressive neurological disease – and death usually occurs within one to 10 years after the onset of symptoms.

However, gene therapy with bone barrow transplantation has been shown to arrest the disease in childhood.

The family is now rushing to set up a charity to ensure the two boys can be treated in a centre of excellence in Minnesota.

Donations can be made to the Save Ryan and Ethan Fund through Bank of Ireland in Tramore, account number 18 59 69 22, sort code 90-47-04.

Irish Independent

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