This is a page created to record Grace’s journey. Grace was born with a rare condition known as Pyruvate Dehydrogenase Complex Deficiency or PDH or PDCD. She was born pre-matured at week 33 weighing 1.7kg on 21 November 2008. She was in Neonatal ICU for 18 days. Grace is denied insurance policies due to her condition. There are only 500 cases in the world. In UK where Grace's genetics doctor of 1.
5 years came from, she only knew of 5 cases. There are no new ones. In Singapore, there are now a total of 3 cases between KKH and NUH. Of course, many cases are undetected or undiagnosed. Grace had problem with swallowing as her muscle tone development are delayed. She has silent aspirations and feeding needs special attention. Mum and Dad have continually explored many ways to help her. Her early years up to 7 years old incurred lots of expenses:
Glenn Doman program basic course alone for parents costs S$4200 before Grace can be considered under their treatment. Eventually Grace did not attend the program with IAHP. Expenses:
- Ketogenic Diet (Expensive Medicine to control Infantile Spasms)
- Weekly Acupuncture
- Feeding clinics
- VitalStim Therapy (to stimulate swallowing)
- Physiotherapy sessions
- Rainbow Centre school Early Intervention Program (EIPIC)
- AFOs/SMOs
- pushchairs
- walkers
思颖患有丙酮酸脱氢酶复合物缺乏症,身体无法使力。其他病症包括行走困难,发育缓慢和癫痫。
思颖是部分因生酮飲食(是一个高脂、低碳水化合物和适当蛋白质的饮食)而获益的成功例子之一。