Facing Challenge Head On
The Challenge
Since birth, Nur Izzudin, now 9 years old, has been struggling with an extremely rare skin disease called Bullous Congenital Ichthyosiform Erythroderma (BCIE), with only less than 10 recorded cases in the national records. It is characterized by scaly skin from birth and, thickening and hardening skin which develops as the patient grows older. When he was born, Madam Siti, Izzudin’s mother and primary caretaker, struggled to take care of Izzudin, where even the simplest of tasks could end up hurting the then fragile baby.
When asked if taking care of Izzudin is difficult, she replied:
“Yes, initially, he is so fragile, he is so small, even if I want to carry him, I am afraid that I will injure him unintentionally… but we keep learning about him, how to take better care of him“.
Solving the Puzzle
Due to the nature of the skin disease, any form of friction on Izzudin’s skin would leave an abrasion on him, this means that even putting a shirt on him normally would hurt him. His grandmother then sourced shirts that have zips around the shoulder to facilitate the wearing of the shirt, subsequently, they realized that button-up shirts were easier and better, but they had to find button-up shirts that had soft collars so that it does not cause abrasion on his neck.
A hot day causes his whole body to flare up in patches, causing him great discomfort, conversely, if the weather is too cold, his skin will be too dry and end up cracking. They realized through trial and error that air-conditioning to cool him down is not ideal as it dries his skin, hence, they place fans all around the house.
In facing these challenges, Madam Siti and her family treats taking care of Izzudin as a learning process. They treat it as a cipher they have to decrypt, a code to break and every day, they learn something new that will help them break the code, that will help them take better care of Izzudin, to alleviate his condition.
Clearing Misconceptions & Creating Awareness
Growing up, Izzudin was not cooped up at home to protect him from the external atmosphere, but he was brought out often to allow him to pick up social skills. One of the common misconceptions that the general public has about his condition is that it is contagious and sometimes, members of the public go up to Madam Siti and inquire about it. Madam Siti told us that clearing these misconceptions lends a voice to patients with the disease and empowers them to be more confident in facing the public.
Encouragement for Caretakers
Madam Siti leaves these words of encouragement to caretakers who are facing similar challenges:
“Your child may be a blessing to you instead of a challenge, they are more sensitive and less self-centred than others. Treat your child like how you want others to treat him, don’t coop them up at home, don’t alienate them from society, help to spread awareness of their condition to empower them.”
Care and Support - Being There For Your Child
Featuring 2022 Exemplary Caregiver Awardee, Mdm Junnie Lim
Mdm Junnie Lim, is the mother of Ashley, 19, and has been awarded the Exemplary Caregiver Award for taking care of Ashley. Mdm Lim works full-time, juggling her time to take care of her two daughters both with chronic illnesses.
Ashley began having chronic migraines 4 years ago and was diagnosed with small fibre neuropathy, Median Arcuate Ligament Syndrome (MALS) and Sjogren’s syndrome. Due to a lack of medical information locally and general awareness of Sjogren’s syndrome, an accurate prognosis regarding how Ashley’s case can be effectively treated or cured remains unclear.
When Mdm Lim takes care of Ashley, she shares that as a parent, it is brutal to endure seeing her daughter in pain every day. For Ashley, her condition warrants the use of a port-a-cath.
It has been very tiring for Mdm Lim over the years, constantly worrying for her daughters. They also started to plan for Ashley’s worst-case scenario during surgery. While death plans have always lurked in her mind since she has 2 daughters with chronic conditions, her younger daughter has 2 liver transplant surgeries which have given Mdm Lim the will to fight till the end for her daughter.
Mdm Lim shares that she finds the most joy when they have their family trips together. She finds that it provides quality family bonding time, clear from any digital distractions which lets them truly spend time with each other. She enjoys their travel together in December and always looks forward to it because, to her, no amount of money can buy their meaningful time together. During their vacations, Mdm Lim always plans ahead by seeking out the nearest hospital in case of emergencies and is prepared at all times.
Thanks to Club Rainbow, Mdm Lim has managed to get both financial and emotional support. Mdm Lim first came to know Club Rainbow 16 years ago through 2 doctors, who acted as her pillars of support, when she felt at her wits’ end as she learned that her younger daughter had biliary atresia (a congenital chronic disease where the bile ducts are blocked or too narrow). The Club Rainbow social workers made her feel like family as they helped her through the emotional roller coaster. Club Rainbow has also supported her financially for her younger daughter’s first liver transplant when she had difficulties raising the pre-surgery deposit and once again when her younger daughter underwent a second liver transplant.
Mdm Lim wants to tell the world that not every sickness has a cure, but that is not the end of the world. Not every parent has a smooth journey and she hopes that everyone has more empathy and sympathy toward parents who are going through tough journeys with children suffering from chronic illnesses and undiagnosed conditions. She believes parents with special needs children should tell their story to the world because if parents can talk about it publicly, they can destigmatise their child’s condition and create awareness. Being embarrassed does not help the child and certainly not those around them because those who have not journeyed with the parents will not understand how much the family has endured and how they can help.
Despite all odds in her circumstances, Ashley has stood her ground and fought her illness with positivity and resilience. She currently provides free tuition to children along the borders of Myanmar and Thailand and has registered for the Teach English as a Foreign Language (TEFL) programme. Aspiring to be a social worker to give back to society, she applied for a psychology course at a Polytechnic, which she was accepted into. As we admire Ashley’s never-say-die attitude and wish her all the best, we hope you share her story with your friends and family to raise awareness and support Ashley and her family in their journey.
Celebrating Heroes 2022
Watch the Exemplary Caregiver Video - click here
A son's first hero
Featuring 2022 Exemplary Caregiver Awardee, Mr Gan Keng Aik
Mr Gan, the father of Aloysius Gan, 16, has been awarded the Exemplary Caregiver Award for his efforts in taking care of Aloysius. Mr Gan currently works in physical security at the management level, overseeing the company operations while juggling his responsibilities with his son.
Aloysius, who attends a special needs school, was diagnosed with cerebral palsy at birth. Due to his condition, Aloysius uses a wheelchair and does not have clear speech. But while his motor skills are affected, resulting in reduced finesse in his hands and fingers, Aloysius can independently handle basic tasks in his daily life.
Just like any child, Aloysius’ daily routine revolves around waking up and going to school. Typically, his mother would send him to school and when Mr Gan gets to go into the office later, he spends his morning sending Aloysius to school. In the afternoon, Aloysius’ mum picks him up and sends him to Boccia training until the evening when he will return home for dinner and homework before going to bed. Admirably, Aloysius’ condition has hardly gotten the better of him and against the odds, he has succeeded in representing Singapore on the national team for Boccia and is a Gold medallist in the recent ASEAN Para Games and Asian Youth Para Games.
When Mr Gan takes care of Aloysius, he mentions that one of the most challenging times was the preparation for Aloysius’ Primary School Leaving Exam (PSLE). While his condition does not impact his IQ, Aloysius takes a longer time to grasp concepts and requires lots of practice papers. It was a tedious and repetitive process as Mr Gan had to go through a concept many times. Fortunately, Mr Gan and his wife divide and conquer as they split tasks to efficiently help Aloysius; Aloysius’ mother tackles Mathematics and English while Mr Gan teaches Science. Due to his condition, Aloysius cannot write and has to use a special keyboard that significantly slows him down, warranting almost double the time for each exam paper.
While it can get arduous at times, Mr Gan shares that the most important aspect of caring for Aloysius is finding out how to nurture and mentor him to inculcate the right attitude toward life; to ensure Aloysius has resilience and determination such that despite other people viewing him differently, he can nonetheless rise above it and accomplish his goals. Whether Aloysius succeeds or fails at doing something, Mr Gan always encourages Aloysius. He commends him or motivates him to try again so that Aloysius learns and grows from his experiences.
As a father holding a full-time job, Mr Gan may need to travel overseas for work once every 1 or 2 months. However, he finds that there is always a choice in life and does not feel stressed or burdened to take care of Aloysius. Although Mr Gan may be busy, he actively spends time with his family when he is off work or entire Saturdays with Aloysius in Boccia training. Whether it is family, friends or hobbies, he believes it is a personal preference to choose how time is spent and he chooses his family. Mr Gan feels the most joy when he bonds with Aloysius. Going overseas for competitions allows him to spend quality father-son time with Aloysius. Some of the most meaningful experiences Mr Gan holds dear include the adventure and little moments he shares with his son because whether it is victory or defeat, he sticks by his son. They will win, lose, suffer and share the glory together.
To him, it is the journey that counts, not the destination.
Thanks to Club Rainbow’s support, Aloysius has been receiving funding through the Talent Development Fund (TDF) over the last few years, enabling them to purchase better Boccia equipment and balls for training and competitions that boost Aloysius’ gameplay.
Lastly, Mr Gan wants to tell the world that whether it is cerebral palsy or other illnesses, it remains up to the individual to decide what it means for their life. With the support of family and friends, any child can realise their dream and not let their condition limit them. Mr Gan believes that everyone has the right to chase their dream and live a fulfilled life.
Among other competitions, Aloysius will be playing for Singapore in the 2023 ASEAN Para Games. We wish the father-son duo the best of luck and hope that you can share their story with your friends and family to raise awareness and support them in their journey.
Written by: HCI Project Butterfly Effect
Edited by: Club Rainbow (Singapore)
A brother's unconditional love
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.