Posted on Jan. 27th, 2016 at 12:15pm
Click here to view a short film based on a true story about family whose child was diagnosed with an Inborn Error of Metabolism. The movie was produced by Adrian Kwan Shun-fai, an award-winning movie director in Hong Kong.
Last October, Mead Johnson Hong Kong donated HK $1 million (US $129,000) to the Joshua Hellman Foundation for Orphan Disesase (JHF) to launch VITAL STEP, a screening and education program to help parents safeguard their newborns against Inborn Errors of Metabolism (IEM).
IEM are rare metabolic disesases that can cause developmental delays and even lead to shortening of life if left undetected. One of every 4,000 newborn babies born in Hong Kong suffers from IEM . Through VITAL STEP, MJN is supporting research and development of newborn screening tests, conducting education seminars for expecting parents and providing support to diagnosed families. MJN also partnered with JHF to cover the costs of IEM screenings at the Center of Inborn Errors of Metabolim (CIEM) at the Chinese University of Hong Kong for 500 babies born in the last two months of 2015. Screenings took place within the first seven days of birth, a critical window when the diagonsis would be most accurate.
CIEM used a simple blood test – the international standard testing method – for the newborn metabolic screenings. A few drops of blood were collected on a card by pricking the baby’s heel. If a newborn is diagnosed with one of the 30 IEM disorders the test screens for, its impact can be significantly mininimized through dietary and medical interventions.
“For decades, Mead Johnson has been one of the few companies that provides specialized nutrition for babies with IEM. Many children with metabolic diseases who are diagnosed are treated early can grow an develop normally. It is important for parents to not miss the critical seven-day window and have their newborns tested after birth. We are glad to advance JHF’s efforts and hope every expecting parent will take this VITAL STEP,” said Ruthia Wong, vice president and general manager of MJN Hong Kong.
VITAL STEP launched on the birthday of Joshua Hellman. Joshua passed away at the age of 15 after a five-year battle with Melas Syndrome, a metabolic disorder that occurs when lactic acid builds up in the bones. Joshua’s mother, Christina Strong, established JHF to advance awareness, treatment and research of metabolic diseases.
“IEM are rare and serious diseases that are often unknown, but can have serious consequences, including death. Despite our efforts in the last few years, awareness of IEM is very low, especially among the local community. Through VITAL STEP, we hope to change this situation and support every child’s healthy development,” Strong said.
 According to information from the Maternal Fetal Medicine Unit of the Chinese University of Hong Kong
Ruthia Wong, vice president and general manager of MJN Hong Kong hopes all parents take a VITAL STEP to have their newborns tested within the critical seven-day screening window.
The VITAL STEP program was launched on the birthday of Joshua Hellmann, son of Christina Strong, founder of Joshua Hellman Foundation.