There are a range of support services available to people living with SMA, their carers and families: 

• NDIS: The National Disability Insurance Scheme (NDIS) is a government-funded service available to Australians living with disabilities. It helps to provide financial assistance access to care services, support and resources. More information can be found on the NDIS website.

• Services Australia: Services Australia is the Australian government agency that delivers social and health-related services, including Centrelink and Medicare. Their website has several resources and links for people living with disability and their carers, available here.

• Disability Gateway: Disability Gateway helps people with disability, their families and carers find the information, services and support they need in Australia. The website can be accessed here.

• Companion card: The Companion Card allows people living with a disability to bring a support person to events and activities without paying for a second ticket. The card can be accessed through your state or territory’s government website. More information is available here. 

• Carer Gateway: Carer Gateway is an Australian Government program providing free services and support for carers. More information is available here.

• SMA Australia: SMA Australia offers a range of support services, including peer-to-peer support and opportunities to connect at events and volunteer activities. Get in touch at reception@smaaustralia.org.au for more information.

The types of SMA are based on the age at which symptoms first appeared and the effect of these symptoms on growth, development and quality of life. The different SMA types have varied impacts and different treatment options, and include:

• Type 1*: This is the most common type. Children with SMA Type 1 may begin showing symptoms between 0 and 6 months of age. Symptoms may include muscle weakness, difficulty holding their head up, a weak cry or cough, and trouble breathing, swallowing, or sucking. These children may not be able to roll or sit up on their own.
• Type 2*: Children with SMA Type 2 may begin showing symptoms between 7 and 18 months of age. Symptoms may include muscle weakness in their arms, legs, and torso (trunk), a weak cough and scoliosis (curvature of the spine). These children may not be able to walk independently.
• Type 3*: Children with SMA Type 3 may begin showing symptoms after 18 months of age. Symptoms may include muscle weakness, especially in the legs, hips, shoulders, arms and breathing muscles. These children may lose the ability to walk as they get older.
• Type 4: Also known as ‘adult-onset SMA’, symptoms may appear after 18 years of age. These can include mild muscle weakness, tremors and twitching. This type of SMA does not impact life expectancy and mobility may be mildly affected.

* However, in Australia, recent innovations facilitating timely diagnosis and treatment of SMA have started to change the way these types of SMA can be defined.

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There are also some rarer forms of SMA:

• Type 0: This type is the rarest and most severe form of SMA. This is also referred to as prenatal SMA as babies are diagnosed before birth based on symptoms such as reduced or absent movement in the womb in the later stages of pregnancy. Joint deformities, muscle weakness and issues with breathing and feeding are apparent at birth. Sadly, children with SMA Type 0 typically only survive for a few months. 
• X-linked SMA: This form of SMA is caused by a change in a gene located on the X     sex chromosome (UBA1). Because of this, X-linked SMA only affects boys. Babies born with X-linked SMA have severe muscle weakness, breathing difficulties, misshapen joints and are often born with broken bones.
• SMA-LED (SMA with lower extremity dominance): This is a rare form of SMA caused by a specific gene mutation. This mutation stops motor neurons from working properly, leading to muscle wasting which is most severe in the legs and thigh muscles (quadriceps). People with SMA-LED often have an unsteady ‘waddle’ when walking and struggle climbing stairs and standing up from sitting.
• SMARD1 (SMA with respiratory distress): SMARD1 is a type of SMA that specifically affects the breathing muscles, with symptoms usually starting between 6 weeks and 6 months of age. This is not the same as SMA Type 1. Sadly, there are no treatments available for people with SMARD1.

A multidisciplinary healthcare team will support you or your child to live well with SMA. This should includes a General Practitioner (GP) and a neurologist, and can also include specialists such as a respiratory physician, dietitian, orthopaedic surgeon, allied health therapist (physiotherapist, occupational therapist or speech therapist) and genetic counsellor. 

Home modifications might be required to accommodate someone living with SMA, such as widened doorways to accommodate a wheelchair, or ramps to assist those with reduced movement. Speak to your occupational therapist for more information. 

Most students with disabilities attend regular classes in mainstream schools. Some students may need adjustments in these environments, or to attend support classes with fewer students who require similar accommodations. Depending on your child's individual needs, you might also consider a specialist school (public or private). For some children, a combination of specialist and mainstream schooling works well. Homeschooling or distance education are also possibilities to explore. 

SMA Australia brings together a community of people living with SMA and their loved ones, to support people living with the condition through initiatives like peer-to-peer counselling, educate the wider public about the condition, and advocate for access to the best care and latest treatments.