Max was diagnosed at 9 weeks old with a rare genetic condition called Spinal Muscular Atrophy (SMA) Type 1. SMA is a degenerative condition and causes progressive loss of movement and muscle weakness. Until very recently, babies born with type 1 would not be expected to live beyond 8-12 months with only a few ever reaching their 2nd birthday. SMA affects the voluntary muscle groups such as those required to move arms and legs but also those required to eat and breath. In Jan 2017 at 14 weeks old, Max was given the chance to try a drug called Spinraza, following the huge success of the drug in clinical trials which ended in Oct 2016. The drug is administered via a lumbar puncture every 4 months in theatre at Ninewells hospital and has changed the course of his fate so far. Max can now hold his head up, sit up unassisted, lift his arms and move his legs. He is a long way from being able to walk and support himself properly but has a special supportive chair at home to prevent the scoliosis in his back from getting worse. He has an adapted buggy to give him extra core support and also a standing frame to help strengthen and build up the muscles in his legs. Max also has a bipap machine which is like a ventilator that he wears every night to give him the chance to strengthen his lungs and take deeper breaths while he sleeps. This also allows the air to circulate round his lungs and helps to limit the chest infections that he is vulnerable to. We are very positive and hopeful that his long term treatment with Spinraza means a positive outlook for Max’s future. He recently got his first set of wheels in the form of a Wizzybug (small power chair) and through the efforts of a small group of friends Max now has his own small hot tub in the garden which he is using twice daily for hydrotherapy. Max has come a long way in the last 18 months and we are positive that his future looks far from the prognosis that was first given.