Website and Blog for the Sam McMahon Trust

Today is Sam’s 11th birthday. It’s hard to believe that so many years have gone by. Sam continues to hold his own and he is a typical happy young man.

Sam receives great support from his family and friends, he is also well looked after by his teachers and Fiona in school, his Pilates teacher Tracy and physiotherapist Eoin. We are also indebted to his doctors and their teams, in Ireland and Philadelphia for their care and expertise.

Happy Birthday Sam! We love you as high as the sky, as deep as the sea and as big as the whole wide world! X

This year Rare Disease Day will take place on February 29th. The aim of the day is to raise awareness about rare diseases. The focus of the campaign this year is Solidarity.

80% of rare diseases are genetic in origin and 50% affect children. In most cases there are no cures. Friedreich’s Ataxia is classified as a rare disease. We would like to join our voice with others who have rare diseases in the hope that those who have rare, incurable diseases will receive more support, understanding and care.

If you would like more information about Rare Disease Day or you would like to tell your story, click here.