Our little niece and the kids’ cousin Ellen passed away in September 2022 at just 7 months old. When Ellen was six months old she was diagnosed with Gaucher’s Disease, type 2.  This is a rare incurable genetic disorder. Ellen is hugely missed by everyone who loved her. Her Daddy, Andrew and Uncle Damian are running the Belfast City Marathon on 30th April 2023 to raise money for Gaucher's research which is currently researching gene therapy in a clinical trial to help treat children with Gaucher's type 2. Andrew is going to run the marathon wearing a 10kg vest, the weight Ellen would have been now. 

As a family we want to encourage Andrew and Damian in their training. We also want to help raise awareness of this rare Genetic condition and if we can raise some money for the vital research to help treat children diagnosed with Gaucher’s Disease that would be great too.

Since the 1st February we have been running a mile a day in addition to any other usual daily activity. By the end of February we will each have run more than a marathon in distance but every mile will be done in memory of Ellen and to let her Daddy and Uncle Damian know we are thinking of them as they train for their marathon. All donations for the Gaucher Association will be hugely appreciated. 

For Ellen, With all our love x