I hope that the Citrin Foundation can be a platform for citrin deficiency children and family to know each other better and from there get to share and learn more based on our life experiences.
Since not all of us are under the same doctor and our children are of different age group.
After the meet up earlier this year, it was beneficial as we never know that citrin deficiency affected children can have a chance of taking dairy products someday. And from the positive feedback some of the parents shared about the normal diet the kids are having, we are definitely feeling more positive.
Recently, my child asked me if she could be a healthy and normal child just like her elder sister. I was devastated, later then I found out that the school teacher actually excluded her totally from biscuits , cakes and treats from birthday celebrations. And this was something she felt left out with and this was also despite our communication with the teacher and school.
This is one inevitable scenarios our affected child may meet in life along the way someday, but nevertheless we hope that they can lead a as normal and as healthy life ahead just like any other child.
As such, we hope this could be a platform that all of us could share and support each other and at the same time work towards to more to better manage this condition for the better of our kids.
