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This time last year I don't think anyone  knew anything about Spinal Muscular Atrophy and how devastating this condition really is and how this would effect all or lives . Being part of team Nelle is not only to rise money for SMA but also rise awareness of terrible disease that Nelle sadly pass away from age four months . As part of team Nelle im am taken part in the 70.3 Ironman Consisting of a 1.2 mile swim 56mile bike and a 13.1 mile run I will also be taken part in the Brighton marathon

What is Spinal Muscular Atrophy?

Spinal Muscular Atrophy (SMA) is a rare, genetically inherited neuromuscular condition. SMA may affect crawling and walking ability, arm, hand, head and neck movement, breathing and swallowing. SMA is often grouped into ‘Types’. Types of SMA are based on the age at which symptoms first appear and what physical ‘milestones’ a baby or child is likely to achieve. Milestones can include the ability to sit, stand, or walk.

There are four main types of SMA: Types 1, 2, and 3 appear in childhood; Type 4 appears in adulthood and is also known as Adult Onset SMA.

SMA Type 1: This is the most severe form, with symptoms usually appearing before a baby is six months old and sometimes before birth. Babies are unable to sit without support. Sadly, usually due to breathing difficulties, most children with SMA Type 1 rarely survive beyond two years of age.

SMA Type 2: The symptoms of SMA Type 2 usually appear between the ages of 7 and 18 months. Children with SMA Type 2 are unable to stand without support. Though this is a serious inherited neuromuscular condition that may shorten life expectancy, improvements in care standards mean that the majority of people can live long, fulfilling and productive lives.

SMA Type 3: The symptoms of SMA Type 3 appear after 18 months of age. Children are able to stand and walk, although they may need more support with this over time. Life expectancy for children diagnosed with SMA Type 3 is normal¹ and most people can live long and productive lives.

SMA Type 4: The symptoms of SMA Type 4 appear in adulthood and may include mild to moderate muscle weakness in the hands and feet, and some difficulty with walking. SMA Type 4 is also known as Adult Onset SMA and is not life-threatening².

These ‘Types’ are not rigid categories. There is a wide spectrum of severity both between the different types of SMA and between children, young people, and adults within each type.

There are also other, even rarer, forms of SMA with different genetic causes including SMA with Respiratory Distress (SMARD), Spinal and Bulbar Muscular Atrophy (SBMA), and