Update on Amethyst and Sai Sai – Our special girls with oromandibular hypogenesis syndrome

31 Oct, 2019

Operation Restore Hope with the assistance of The Mill House Foundation and Mao & Ophee De Vera (members of our partner The Philippine Australian Medical Association – PAMA) have been sponsoring Amethyst and Sai Sai now for five years.  Both these little girls have oromandibular hypogenesis syndrome, meaning that they were born not only with incomplete arms and legs but also with incomplete sealed jaws.  The condition is very rare, so it is unusual to have two little girls not too far apart in age in one program.  Having one another and meeting and sharing experiences for them and their families at Operation Restore Hope screenings and clinics with our partner the Mijares Gurango Craniofacial Foundation has given them a small but mighty support group. 

The girls will continue to require support as they grow as they need to have their prosthetic legs updated regularly and will have to continue to conquer special medical needs around breathing, feeding and the development of their mandibular area as well as their gross and fine motor skills.  What is most gratifying is that both girls are in school, socialising and age appropriate or better in literacy and numeracy.

Sai Sai in 2015 Aged 5 Sai Sai in 2019 Aged 9

Sai Sai is now nine years old.  Not only is she walking and moving confidently on her prosthetic legs but she is breathing well without a tracheostomy and feeding normally.  In fact, her favourite food is Jollibee burger steak.  She is at the top of her class and winning academic medals as shown in her picture above in her school uniform. 

Amethyst in 2015 Aged 3 Amethyst in 2019 Aged 7

Amethyst is now seven years old.  Amethyst had difficulty and discomfort adapting to her prosthetic legs but is able to ambulate now on her limbs.  She still requires a tracheostomy after having had pneumonia a few years ago.  She is eating normally, socialising wonderfully and enjoying school.  She loves to draw and is the artist of the charity’s caterpillar note cards.

Both girls are absolute inspirations to all the volunteers at Operation Restore Hope who have had the privilege to get to know them over time.  Most people would find any one of the challenges they face to be a burden, but they and their families face these challenges with immense courage, never wasting a moment on self-pity.  They are both true heroes and we look forward to sharing in their victories for years to come.