It is with much sadness that I must inform you all, on August 1st -- the first day of SMA awareness month -- Our son, Mack, passed away. Our brave little fighter put up an almighty fight, but it was time for him to rest his tired body. He was the most amazing little boy, so strong willed, cheeky and clever. Such a little character. We have 2 years and 4 months of wonderful memories with our sweet boy and we are so truly blessed for those times. Mack's passing shows us the harsh reality of this disease, that there is no time, progression of SMA happens that quickly, you simply do not have time to be fighting the system. The meaning behind our original petition may have changed but our goal is still the same. We will not let Mack's death be in vain. We will continue the fight, the fight to allow all kids living with SMA to receive adequate treatment and to allow them to live to their full potential. Mack's journey proved you can live a fulfilling life with SMA, that with correct treatment and equipment, kids can exceed the standard "take them home and love them, there is nothing we can do" rule, the doctors provide you with upon diagnosis. There is something you can do, there is so much you can do and it's about time the medical professions realised the value there is to a life with Spinal Muscular Atrophy. Thank you to each and every one of you who signed our petition, Mack couldn't be saved but maybe in his legacy others can be and we hope you will continue to follow and support our fight.