Written by Mary Lee, Grace’s mother
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.
On the onset, Grace had swallowing problem and silent aspirations as her muscle tone development are delayed. She also had seizures.
For the past years, Mum and Dad have continually explored many ways to help her. Treatments included VitalStim Therapy to stimulate swallowing, acupuncture treatments for brain stimulation and many Physiotherapy, Occupational therapies and feeding clinics. Parents also spent money attending courses and workshops to learn care-giving and ways to help her overall development.
Grace’s monthly medical expenses are putting tremendous pressure on the family with the following:
– Ketogenic Diet (lifelong treatment for her condition which include expensive milk powder and oily diet
– Physiotherapy sessions
– Rainbow Centre school and transportation costs
As a RDSS beneficiary, Grace has been blessed with a Kaye walker through generous donation and have benefitted from the Medical Intervention Scheme. The family has also benefitted from RDSS various programs.
Grace will still needs a wheelchair and help with expenses. Respite care for caregivers is also appreciated as it remains challenging to care for a special needs child.