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 second 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,.The drug is administered via a lumbar puncture every four months in theatre at Ninewells hospital and has changed the course of his fate so far.

Max is making huge progress.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 .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. Max has a whizzybug a set of wheels which was purchased through a loan scheme from a company in Bath. This is a very small power chair that Max has become very adept at using and is giving him the independence that he wouldn’t have otherwise. The fundraising efforts of a small group of friends has meant that Max now has his own small hot tub in the garden which he is using twice daily for hydrotherapy. Daily physio in a warm water pool will help him to further develop and strengthen all the muscles in his body and so far he can almost stand unassisted with the support and buoyancy of the water. Max has come a long way and we are positive that is future looks far from the prognosis we were first given. His journey continues daily with a strict routine of medication, pump feeds and physio therapy but he is a determined little boy and is defying all the odds so far. X