Spinal Muscular Atrophy – the silent scourge that robs children of their quality of life

Lambano Sanctuary desperately needs your help. A little girl with Spinal Muscular Atrophy (SMA) has been admitted to Lambano Hospital Facility. Her condition causes her muscles to grow weaker and makes movement incredibly difficult. Sadly, SMA is a condition that just gets worse over time, however symptoms can be managed.

This little girl needs continuously needs medical oxygen because her SMA is making it hard for her to breathe. We can only discharge her once her family has secured home oxygen for her.

Spinal muscular atrophy (SMA) is a genetic condition that makes the muscles weaker and causes problems with movement. It’s a serious condition that gets worse over time, but there are treatments to help manage the symptoms.

Every child with SMA is affected differently, and the degree of severity can differ from child to child. The first signs of SMA begin to show themselves between 1 and 6 months of age and are indicated by the child missing developmental milestones like being able to hold their head up by themselves between birth and 8 weeks.

Children commonly exhibit difficulty in swallowing muscle wasting. Motor neurons in the brain – the neurons that relay messages to the brain and body – are lost, causing the child to lose the ability to move their extremities and to become “floppy”.

SMA does not affect intellectual abilities of children, nor does it affect their ability to feel pain. There is no cure, but there are treatments available to manage secondary symptoms such as muscle weakness. Tests can be done once the child is born and treatments such as physio and occupational therapy could be utilised to manage symptoms.

Lambano Sanctuary is a non-profit organisation that specialises in offering palliative care and support to children with life-threatening and life-limiting illnesses. Spinal muscular atrophy is just one of the conditions that we see.

We rely on help from organisations and people like you so that we can continue to offer holistic care to those in need. If you would like to extend a helping hand, please visit Donate – LAMBANO for more information.

Symptoms:

  • Progressive muscle weakness, usually the same on both sides
  • Floppiness
  • Muscle wasting

Every child may experience symptoms differently. The disease is divided into types based on age of onset and functional ability. There is also a range of severity within each type and as many as 25% of individuals may not fit a precise type.

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