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

What is Biliary Atresia?

By Rachele Foo, Content Contributor

Jannah is seven this year, and just like every other seven-year-old, she started her first year of primary school. There, she makes friends, study hard and participates in physical activities. At home, however, her mother, Mdm Ida, is especially concerned about Jannah’s health. That is because Jannah was diagnosed with Biliary Atresia when she was just one month old and had to undergo a liver transplant at nine months.

What is Biliary Atresia?

Biliary Atresia is a condition where bile ducts become blocked. This results in the bile, which is needed to break down fats during digestion and carry away waste, being unable to leave the liver, damaging it. This condition only occurs in infants, and it is very rare, affecting 1 out of 20,000 infants. The treatment for this condition is the Kasai Procedure which involves removing the blocked bile ducts and connecting the small intestine to the liver. If it is not successful, a liver transplant is needed.

When Jannah was diagnosed with this condition, Mdm Ida felt completely at a loss. She had never expected that her daughter would be sick and had never even heard of or knew of anyone who suffered from this condition. The doctors told her that there were survivors, but she was not fully convinced, especially after seeing how the first operation, the Kasai Procedure, did not make her daughter better. She was also suffering from guilt. She was worried that her having Jannah at a later age was the cause of this. Luckily then, she met another mother who went through what she did and was introduced to a support group where others shared their experiences. There, she learnt that the condition was neither caused by her late pregnancy nor what she did when she was pregnant nor was it hereditary.

As she raised Jannah, one of the greatest challenges that Mdm Ida faced, was having to use a tube to feed Jannah when she was just a baby. She had to muster all her courage and force herself to insert the tube, even as her baby cried and tried to pull it out as she had to ensure that Jannah reached an ideal weight for the liver transplant.

Thankfully, the liver transplant went smoothly, and a while after the operation, Jannah did not need the tubes anymore. However, Mdm Ida remained extremely careful. That is because Jannah falls sick easily, and the symptoms are often more severe, resulting in hospitalisation. This was one of the reasons why going out, something so ordinary for the rest of us, was complicated for Jannah and Mdm Ida. For example, when Jannah was younger, before heading out, Mdm Ida had to ensure that the stroller was fully covered to protect her from the natural elements and germs.

Now, Jannah’s condition is improving, and that is what Mdm Ida is happiest about.

As she looks back, she is grateful for all the support they had received, including the help from Club Rainbow. She was especially thankful for the social worker who went over and beyond to help her reach out to Jannah’s school to ensure that Jannah could borrow a laptop in case of home-based learning. Mdm Ida also looks forward to the activities planned by Club Rainbow, such as storytelling, as she believes that it provides an excellent opportunity for Jannah, allowing her to interact with more children of the same age as well as to gain exposure.

When thinking about the future, though, Mdm Ida is still worried. She worries about who will take care of Jannah when she is gone and about Jannah not having insurance due to her condition. This means that they might have to rely only on subsidies which would create a substantial financial burden.

Lastly, Mdm Ida hopes that there could be greater awareness of Biliary Atresia so that others could understand her situation better and not judge so quickly. Still, she knows that this will take time. In the meantime, she encourages all parents going through similar experiences to stay strong and positive and seek comfort in support groups.

Source: https://www.nuh.com.sg/Health-Information/Diseases-Conditions/Pages/Biliary-Atresia-(Children).aspx