Bone marrow transplant ‘the only hope’ for Ryan, 6

A 6-year-old boy and his parents have arrived in the US where he is preparing to undergo a high-risk bone marrow transplant.

Ryan Caulfield-McCormack and his brother, Ethan, 4, were diagnosed with an inherited disorder made famous in the 1992 film Lorenzo’s Oil.

The two children, from Tramore, Co Waterford, have the rare genetic condition known as ALD, or adrenoleukodystrophy.

Ryan’s twin brother, Jack, who was also tested for ALD, does not have the condition.

The children’s parents, Caroline McCormack, and her husband, James Caulfield, have desperately tried to save their boys since the diagnosis.

Sadly, the 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.

Ryan is now preparing for the operation after a donor was found. Ethan will undergo the procedure in the near future.

“In 2006, I gave birth to twins, two beautiful boys, Ryan and Jack. They were both perfect, healthy, and happy in every way and meeting all their milestones with ease,” said Caroline.

“It got even better two years later when another bundle of joy arrived in the form of Ethan, whom we affectionately call ‘Big E’.

” I was blessed with three beautiful boys and life was rosy.”

But less than three months ago, Ryan started showing unusual symptoms.

“He had become a little clumsy and his attention span seemed a bit short.

“When Ryan went back to school in September, his teacher also noticed that something was amiss and thought maybe that there was something wrong with his hearing, but a hearing and eye test confirmed that all was normal.”

Caroline continued to look for answers. She brought her son to Tallaght Hospital where an MRI was carried out at her insistence. Doctors finally diagnosed Ryan with ALD — and later confirmed Ethan also has the disease.

“A bone marrow transplant is the only hope for Ryan,” said Caroline. “This procedure carries with it huge risks that I don’t like to dwell on, but it’s the only option available to us at the moment.”

The family needs up to €3m to cover the cost of the transplants.

Grandparents Eamonn and Jo McCormack are taking care of Caroline and James’s other two children while they stay with Ryan in the US. They expect to be there for six months.

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

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