On March 28th 2015, friends, family and I will be trekking up and down the tallest mountain in the UK (Snowdon) to raise money and more importantly awareness of a charity called the T9M Trust.  I like you had never heard of the charity until very recently.  We only found out, as some of you will know because my nephew Joshua (age 2) was recently diagnosed with an exceptionally rare genetic condition called Trisomy 9 Mosaicism.  

This condition is so rare that as of July 2014 there were only 120 known cases globally (this equates to approximately 1 in 100,000,000 or a different way is that we could win the UK National lottery 5 to 6 times).  What this condition means long term is vague at best (as there has been no research conducted) but what we know is he has delayed development particularly in language and communication, and difficulty feeding, scoliosis, plagiocephaly.  At the present time we feel lucky that his condition is not affecting him much more since many children with this condition have difficulty breathing, walking, and often have heart, lung and kidney defects all have delayed development and difficulty eating.