Since February is a month for love and celebration, now’s the perfect opportunity to share this super mum’s journey with a child who has special health needs. Meet Nicole Wang, mother to four-year-old Kayson who suffers from the rare metabolic disease, Glycogen Storage Disease Type 1a.
This condition requires adorable Kayson to consume cornstarch every three hours throughout the day and night so that his glucose levels remain stable. The level of care given by those around him is unparalleled, requiring unwavering commitment and plenty of sacrifice, which Nicole knows all too well.
Please tell us a little bit about Kayson.
Kayson was diagnosed with the rare Glycogen Storage Disease Type 1a when he was seven and a half months old. We discovered his condition when he started to get ill and after various tests, his liver showed up as enlarged and very bloated. This condition is very rare so we had to go through quite a number of tests before the diagnosis was finalised. Prior to the diagnosis, Kayson showed no symptoms but he kept crying to be fed and subsequently, we were told that his blood sugar was dangerously low.
Those early days were trying times for me. Looking back, I’m glad that at least now we know what Kayson needs and how to respond to his needs. Presently, he has grown accustomed to his condition such that many a times he is able to tell me that he is feeling the effects of having low sugar. This in turn gives me ample time to react and take the necessary actions.
There is no cure for this disease. To cope with it, Kayson has to maintain a very strict diet and later on in his life, he may need a liver transplant. However, for various reasons a liver transplant is not recommended.
What kind of diet does Kayson need to be on?
Kayson has to be fed cornstarch every three hours throughout the day and night. This is the only treatment available to him right now. Cornstarch serves as a reservoir of carbohydrate that slowly releases sugar into the blood to keep the blood sugar level at a normal range. Every morning, Kayson needs to be pricked for a glucose test, similar to diabetic patients in order to monitor his sugar levels and ensure that they are maintained at a normal level.
The amount of cornstarch needs to be accurate so I measure it using a food weighing scale. I will also prepare his breakfast such as cooked rolled oats with proteins like fish, or oat bread with peanut butter that has no added sugar. I make sure that every morning he brings that to school so that I know he will be fed the correct diet.
Kayson’s feeding time has to be strictly adhered to as advised by his dietician so I need to let the school know about his condition. I also have to educate Kayson himself from very young that there are many things which other kids might enjoy eating but he must not. He knows now that he cannot take sugary food, so no ice cream, no Milo, no sweets, etc. for him.
When Kayson was about three and a half years old, I trained him to wear a Fitbit with an alarm to remind him or his teachers that it is time for him to drink his cornstarch in school.
All this must be so tough on the little guy to cope with and remember!
Yes, but it is crucial for the sake of his health. When Kayson was younger, he was admitted to KKH (Kandang Kerbau Hospital) every other month. Whenever he caught a virus, he would become so sickly to the point that he needed to be attended to immediately due to his critical condition and the doctors would put him on a special drip. He was admitted twice to the High Dependency Ward.
You also have a lot to cope with as the main caregiver. How do you manage this?
First, I had to accept Kayson’s condition then quickly learnt to manage it, plus cope with work and his multiple admissions into the hospital. I am glad that I have strong family support even though it must have been hard on my family, especially my parents, to accept Kayson’s condition. Despite all that, they continue to support me and encourage me. They always make sure that I eat well and would prepare healthy meals and tonics so that I have the energy to take care of my son. My siblings and aunt help out too, especially during times when Kayson was hospitalised or when my husband travelled for work.
With my husband’s support, I took no-pay leave for a few months because of the frequent hospital admissions. Subsequently, I reverted to part-time employment. Having a supportive work arrangement is important. Thankfully, my boss is very understanding and supports me by providing me a flexible work arrangement. I am also thankful for Kayson’s caring preschool teachers who attend to his feeding needs.
At one stage, I also had to give up my personal time and social life. During my most difficult times, my good friends frequently checked in on how I was doing via text messages and phone calls. I am to be able to pull through all the trying episodes because of their unwavering love and support!
Last year, I started to attend therapy sessions with a medical social worker to seek support and learn about self-love and self-care. So far, it has been helpful in giving me the confidence in walking the life journey with Kayson.
I am also really thankful to the Hegen team! I have relied heavily on the Hegen containers to stack and store Kayson’s cornstarch portions even after I was no longer pumping and breastfeeding.
It was our pleasure to help in such a small way. Do you have any words of wisdom to share with other parents who may be facing similar struggles?
Kayson is my greatest strength! It is a blessing to witness his smiles, see him grow (up to be a lovable boy), enjoy his hugs and kisses every day; all that takes away all my tiredness and heartache!
I would like to remind fellow parents that having self-love and self-care is crucial when you are in the midst of battling the storm. However, that there is always a rainbow of hope at the end of every storm. Always seek help and get support if you need to. Never give up; it’s all worth it for your child!
Despite all the hardships, let’s be grateful for and cherish the time we have with our children regardless of our family situation. Let’s also teach our children to have empathy and compassion. Be a rainbow in someone’s cloud!
