When my son was diagnosed with CD when his jaundice lasted for months, I was initially relieved that it was not something more sinister. However as I read up more on CD, I realised there were many unknowns, for instance, what are the chances of a child with CD developing CTLN2 in adulthood and what are the factors that can/will cause such development. In fact, the more I read up, the more questions I had and yet I was unable to find satisfactory answers. There was just too little medical research done in this area!

When the CD Foundation was set up this year, my husband and I were invited to its inaugural seminar. Then, our son was already 4 years old and together with his PD’s help, we have settled into a routine of managing his diet and monitoring his blood tests regularly to ensure he is doing well. Apart from his ‘peculiar’ food preferences, he is really like any other kids albeit somewhat on the skinny side.

At the back of our minds, we are keenly aware that there could be a possibility that he might develop CTLN2. Hence we are really glad that this foundation was set up by two founders who are also deeply interested in this area. There is so much more to discover and uncover about CD and it is really my hope that more medical research can be done to ascertain and develop preventive measures and treatment of CTLN2 for children with CD. Additionally, as parents, we desire to see our son display healthy growth physically, mentally and emotionally. Therefore, I will be more than glad to have more information on whether and how CD would cause any disruption/slowdown during his growing years (if there is a causation relationship), and how to manage such disruption/slowdown in growth.

The CD Foundation also connected some of the parents who unwittingly found ourselves having to manage this genetic condition in our children. So far, the parents have communication over Facebook. Hopefully sometime in the near future, we might have a chance to meet and interact together with our children.