Journey with Grace

Contact the business

Journey with Grace This page is to update and share Grace's journey to all supporters. We are no longer collecting funds as there is no need for it now. Updated January 2022.

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。

A rare picture with Rainbow school teachers outside of school. We are out at Justin’s birthday party 💙
17/10/2026

A rare picture with Rainbow school teachers outside of school. We are out at Justin’s birthday party 💙

class photos in year 2025. Thank you teachers n our beloved domestic help Lyn for assisting Grace and making her schoo...
08/09/2026

class photos in year 2025. Thank you teachers n our beloved domestic help Lyn for assisting Grace and making her school days so memorable!

23/08/2026

Precious Sunday time

Typical day after school, she is super tired… eyes cant open.
01/08/2026

Typical day after school, she is super tired… eyes cant open.

30/07/2026

Enjoying herself at playground this morning :))

Physiotherapy during school holidays
24/06/2026

Physiotherapy during school holidays

Heartfelt gratitude to our incredible donors who helped Team Amazing Grace shatter expectations and raise funds for Rare...
30/05/2026

Heartfelt gratitude to our incredible donors who helped Team Amazing Grace shatter expectations and raise funds for Rare Disorders Society (Singapore)! With fundraising closing on 31 May, can we surge forward together to cross the S$12000 milestone? Final dash!

Last day of school for 2026 H1… big girl already… final year student
28/05/2026

Last day of school for 2026 H1… big girl already… final year student

Taking School outdoors
22/05/2026

Taking School outdoors

17/05/2026

Grace doing cycling exercises in school

Address

Singapore

Website

Alerts

Be the first to know and let us send you an email when Journey with Grace posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Business

Send a message to Journey with Grace:

Shortcuts

Share