Hypotonia and moving against gravity

Moving does not come easily to individuals with hypotonia. From birth, gravity works against their efforts to GET UP. It starts with what comes natural to most of us – lifting the head up… then sitting, pushing up on the arms, balancing and pushing up on the legs, standing and walking. Boy oh boy, is it hard work to our Phelan McDermid individuals! But what causes it?

The nervous system or muscular system can cause hypotonia. Sometimes it is the result of an injury, illness or it forms part of a genetic syndrome such as Down Syndrome or in our case Phelan McDermid Syndrome. It can be seen in genetic syndromes as well as conditions such as cerebral palsy, brain damage (for example, due to lack of oxygen at birth) or muscular dystrophy. In many cases this chronic condition requires lifelong care and treatment.

How does it affect individuals?

  • Poor head control
  • slouching
  • stumbling often
  • lack of strength
  • delayed (or lack of) gross motor skills development
  • delayed (or lack of) fine motor skills development such as grasping, pulling etc.
  • GI issues (gastrointestinal issues often occur)
  • Speech impairment
  • Feeding issues (struggles to suck, chew, bite etc.)

Treatment and supportive equipment can be effective and is needed. Implementing physical, occupational and speech therapy regularly is beneficial.

About US

The purpose of Liesel’s Heroes, is to spread awareness of the rare chromosome deletion, Phelan McDermid Syndrome and help support Liesel’s extensive needs. There are only 2500 diagnosed in the world!

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