Featuring 2022 Exemplary Sibling Awardee, Shuy Yao Kang
Yao Kang, 21, is the brother of Shuy Yao An, 14, and has been awarded the Exemplary Sibling Award for taking care of Yao An. Yao Kang is currently at Nanyang Technological university studying medicine while juggling his studies and his responsibilities with his brother.
Yao An has MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes) which is a condition that affects 1 in 4000 people and results in an accumulation of lactic acid in the blood (lactic acidosis), that can lead to vomiting, abdominal pain, fatigue, muscle weakness and difficulty breathing. It takes away a person’s bodily functions, making Yao An incapable of walking and unable to consume food through his mouth. As a result, Yao An has to use a specially-designed pushchair to move around and the usage of a feeding tube to get his daily nutrients. Further, he also suffers from seizures, which are hazardous because they can lead to his getting injured, such as a hard impact on the head or a fall. Despite Yao An's inability to express himself verbally, his family can still decipher what he is thinking by reading his body language.
Even though most of Yao An’s basic needs are taken care of by his parents and helper, Yao Kang still tries to help out as much as possible daily. Some of his duties include helping Yao An with his hygiene and changing his clothes. Although these may sound easy, they are no easy task as Yao An is 14 years old, and is of similar build to the youth of his age and it is not easy for Yao Kang to manoeuvre Yao An alone. This is especially difficult while helping him shower as Yao Kang has to hold his brother up for an extended period and shift him around. For meals, Yao An has to eat through a feeding tube so Yao Kang has to prepare the food in advance and plan his time around Yao An’s meal time. Apart from meals, Yao Kang also ensures that his brother takes all the prescribed medications at the correct times and dosage. Throughout the day, Yao Kang uses spare pockets of time in his packed schedule to interact with his brother and carry out activities with him.
On a day-to-day basis, Yao Kang does not feel too stressed by his responsibilities in taking care of his brother as the nature of his brother's condition follows a fairly consistent routine every day, and hence very predictable on what to expect. However, Yao An’s future is still uncertain as his condition and needs may change. As a result, Yao Kang finds it difficult to make long-term plans as he is not sure of when his help may be needed to look after his brother.
Through his years of taking care of his brother, the most important lesson that Yao Kang has learnt is to make the best of what you have and to live life in the present without wishing that things were different.
Lastly, Yao Kang wants to share with the world that individuals with alike conditions to Yao An have feelings too even though it is not easy for them to express. Just like us, they have their interests and we have to find out how to meet those interests by reading their non-verbal cues. Even if they seem uninterested in what we are doing for them, they are incredibly grateful for any help and interaction we can give to them.
As we wish Yao An and Yao Kang all the best, we also hope that you can share their stories with your friends and family to raise awareness and support Club Rainbow beneficiaries and families in their journey.