My family's world was turned upside down in July, with the diagnosis that our beautiful, happy little boy Brodie has Spinal Muscular Atrophy (SMA) Type 2.

SMA is a genetic neuromuscular disorder caused by a mutation in the SMN1 gene. This gene codes for the main protein needed for the motor neurons of the spinal cord to survive. Without it there is a lost connection between the brain and the skeletal muscles, which leads to degradation of the muscles. Simply put, kids will likely not walk unaided for their life and will lose mobility in other limbs over time.

It is the leading genetic cause of infant death.

My personal hope is that newborn screening for SMA becomes standard practice in all countries, which will lead to early diagnosis and access to the best medication needed when they need it the most.

I am going to be running this Ultra marathon to show my son, that although things may seem impossible and scare the living daylights out of him, that with a strong mind anything is achievable.

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Established for over 30 years, SMA UK are a charity that supports, campaigns and advocates so that everyone affected by Spinal Muscular Atrophy can access the best care, services and treatments, and benefit from continued research. We offer adults, young people, parents, relatives and friends emotional support, practical advice and guidance from our experienced team and provide reliable health and social care information about SMA. We also provide and distribute free multisensory toy packs for infants who are diagnosed with SMA.