Since Mui was 12 years of age she has been seen pro bono by Dr Lauren Bramley of Dr Lauren Bramley and Partners, who has helped us with both the physical issues and the mental scars that affect Mui on a daily basis.
Mui's powerful TVB video with a very emotional ending
HARLEQUIN ICHTHYOSIS is a life threatening genetic skin disorder, which causes the skin grow ten times faster than normal.
The skin constantly splits open and is no barrier to infection.
It's caused by the mutation of the ABCA12 gene, and occurs when both parents carry the gene even though they themselves have ordinary skin.
Until recently most babies born with Harlequin Ichthyosis died within the first years, but as medical care improves, more children are surviving.
The oldest survivor in the world is only 31.
We believe our daughter to be the oldest survivor with Harlequin Ichthyosis in Asia, and the fourth oldest in the world.
The skin constantly splits open and is no barrier to infection.
It's caused by the mutation of the ABCA12 gene, and occurs when both parents carry the gene even though they themselves have ordinary skin.
Until recently most babies born with Harlequin Ichthyosis died within the first years, but as medical care improves, more children are surviving.
The oldest survivor in the world is only 31.
We believe our daughter to be the oldest survivor with Harlequin Ichthyosis in Asia, and the fourth oldest in the world.
F.I.R.S.T. the Foundation for Ichthyosis & Related
Skin Types is a great resource.