GoFundMe set up for Cork one-year-old battling rare disease

A fundraiser has been launched for a Cork boy who needs to undergo crucial specialist treatment in the UK.

One-year-old Warren McSweeney from Knocknaheeny was diagnosed with a rare disease known as Mucopolysaccharidosis 1, or Hurler Syndrome, back in July.

Children with Hurler Syndrome lack an enzyme that the body needs to digest sugar. 

As a result, undigested sugar molecules build up in the body and can cause damage to multiple organs.

Although the disease is incurable, there are treatments available to help him with development as he grows up.

Since July, Warren has been receiving five hour synthetic enzyme infusions (ERT) every Monday in Temple Street Children's Hospital. 

Warren's mother Leona who was heavily pregnant with her second child had the added stress of a commute from Cork to Dublin every Monday morning and also not knowing if her unborn baby could also have the same condition as Warren. 

Fortunately, baby Lucy was born only two weeks ago and has been tested and thankfully she does not have this syndrome.

In October, Leona and Warren's father Kenneth will travel over to Manchester Royal Hospital, where Warren will receive specialist treatment.

Warren will undergo chemotherapy first before a bone marrow transplant.

The doctors will continue to monitor him while they wait for engraftment (when his body is reproducing only the donor cells) and keep him on a lot of medication to prevent sickness during this precarious time. 

The ultimate goal is that his own body can start producing the needed enzymes so that they can pass through the blood-brain barrier, unlike the synthetic enzyme he is currently getting, and his brain can keep developing.

Due to Covid restrictions, baby Lucy will not travel over to the UK and will be looked after by family members in Cork.

Speaking to The Echo, Leona said they will be over in the UK for three to six months, or even longer if the treatment is unsuccessful. 

"It mightn’t work the first time around – if it doesn’t work we’ll be over there for a longer period of time," she said.

Leona thanked everyone who has donated to the GoFundMe page so far, which was set up by friends and family members. 

To donate visit 'Warren's fight against Hurler Syndrome'