Alfie sets off on US journey of hope

March 11, 2019

A Newry boy suffering from a rare muscle wasting genetic disorder is set to take off on a journey of hope to the US tomorrow (Tuesday) for pioneering treatment.  Little Alfie Pentony, who was diagnosed with the rare degenerative condition in 2016, will be one of the first children in the world to undergo the trailblazing gene therapy. 

His parents Colleen and Jamie, along with an army of supporters across the district have been tirelessly fundraising over the last six months to raise the £150,000 needed to fund the American trial.   Communities, schools and businesses have taken his cause to their hearts fundraising activities taking place on an almost daily basis – the most recent a glittering Valentine’s Gala Ball held in the Canal Court Hotel last month. 

Overwhelmed by the support of the community far and wide, his family have appealed for a final push of donations to get the six year old through the medical intervention which will see the family relocate to the US for extended stays throughout Alfie’s life-changing experimental  trial in Florida.

Collen and Jamie hope that the treatment will halt the degenerative effect of DMD and encourage Alfie’s body to produce a vital protein so that Alfie can live a relatively normal life.

To donate to the Fight for Alfie visit: https://www.gofundme. com/help-us-save-alfie