What we know so far about Little Wee Man

Jax’s problems began when the cord was cut. They say he didn’t do the transition from foetus to baby. Although his APGAR score was high

  • He had polycythemia (he was burgundy in colour)
  • Was intubated and ventilated
  • He has chest recession
  • Stridors
  • Trachealmalacia
  • Broncholmalacia
  • He can’t swallow (he’s fed by ng tube)
  • He has apneoas and regularly stops breathing (he’s on oxygen 24/7)
  • He has jitters
  • Clonus and myoclonus
  • Delayed development by about 5 month (but he is making progress)
  • Allergic to cows milk protein
  • Has eczema
  • Gastro-oesophageal reflux.


So why is he a medical mystery???

These are just a few examples of why Jackson is a medical mystery or “unique”/”not text book”. These are why we need you to SHARE HIS STORY..

Jackson has apneoas on a daily basis. He forgets to breathe and his SATs drop. Jackson also has apneoas where his SATs are in the high nineties and maintain that level while he physically isn’t breathing and intervention is needed. He can also maintains his colour while this is happening??????

Jackson can be fully alert breathing etc. But his SATs can be sitting low 60s. Again, he can maintain this until we step in.

Jackson has stopped breathing turned blue!! Yet the machine levels have been within normal limits???

He has passed EEGs VEPs but in a crowded noisy room he goes into a wipe out sleep.. where he is only responsive to pain. This comes on suddenly..

His jitters and muscle tightness are intermittent there’s no pattern. He can switch sides that’s affected and or limbs.

He has had normal childhood illnesses. Colds, sickness diarrhoea etc but has NEVER had a temperature.

The list goes on. Please SHARE and feel free to ask questions xx