Update on Sai Sai & Amethyst

15 Jun, 2018

During our last patient screening we were able to spend some time with two of our most special patients: Sai Sai and Amethyst both of whom have a very rare condition called oromandibular hypogenesis syndrome.  The girls were born unable to open their mouths and are lacking parts of their jaw as well as complete arms and legs. Sai Sai and Amethyst are two very special, brave and intelligent little girls but they will require ongoing sponsorship especially during their growth phases.  Thank you to everyone who is helping us to help them and a special shout out to Mao and Ophee de Vera who have been donating themselves and helping us try to raise funds.


Sai Sai is the most determined little girl you could imagine.  She is actually attending school, is able to open her mouth now and is eating.  Her favourite is Jollibee burger steak!  She can read and write and do basic mathematics but her speech is underdeveloped.  Poor little thing had a terrible toothache when we last saw her but she is determined to be accepted and to do things that normal children do.  She is coping very well with her prosthetic legs and will be fitted with a new pair shortly as she is growing.  Sai Sai has a real dignity of spirit and courage that is admirable.


Amethyst still has a tracheostomy and this has needed to be changed and cleaned regularly.She is also struggling with her legs as she is much stronger on one side of her body than the other and therefore finds it hard to balance and walk on the prosthetic legs. The dominant leg also gets very sore from the rubbing and irritation.  Amethyst is however, progressing nicely in her general health and growth and is able to eat and drink a fairly normal diet.  She lacks speech development.  She is however, able to understand everything and can read at an age appropriate level.  Amethyst has a very gentle and loving nature and with her big eyes and tenderness engenders those around her.  You simply cannot help loving Amethyst.