Who is Zecia Chew?
Zecia is a 12 years old girl, diagnosed with Gaucher’s disease at the age of 3 years old. This disease will cause fats to accumulate in her body which causes severe stomach bloating and will be fatal if she does not receive treatment. She has to be admitted to the hospital every 2 weeks for her infusion. This life-saving enzyme replacement therapy is needed for her to be able to continue to live, like a normal child.
Her journey living with rare
Zecia is a regular in KKH and has been receiving her infusion for the past 9 years. For the treatment, she has to be pricked and the IV plug set on her hand. Instead of being afraid of the needle, Zecia can even help the nurses to choose her vein to set the plug! Although she looks comfortable even as she rests on the hospital bed, with the needle on her hand, as parents, we feel the aching pain in our hearts.
This journey of the past 9 years has not been easy. However, Zecia is a very brave and jovial girl and it just warms our heart seeing her still being so positive. As her parents, we knew we need to stay even stronger, to give her more support. We are and always be here for our most courageous girl, to be the pillars of her life.
How RDSS helps?
When we first knew that Zecia is diagnosed with Gaucher’s disease, we were shocked and lost for words. We have absolutely no idea even how to react. Knowing that our girl is sick with a disease so rare, how can we help her?
We are glad that RDSS appeared in our lives. We get to know other parents whom their child also has a rare condition. They comforted us, gave us support, shared information and showed us that we are not alone in this journey. They gave us light in those dark times! We are deeply thankful to RDSS for always being there with us.
Every child is unique. They are special. They are a gift from the god. They are precious and deserve to be loved. Stay positive and strong.
Always remember, Love is not Rare.
Find out how you can help her, visit her FB page!