Jacques’s other health issues

I thought I’d update you a bit on Jacques’s other health issues.

Along with the type 1 diabetes he also has cfc syndrome.  This stands for Cardio-facio-cutaneous syndrome. You can read more about this syndrome at www.cfcsyndrome.org.

What is Cardiofaciocutaneous (CFC) syndrome?

CFC syndrome is a rare genetic condition that typically affects the heart (cardio-), facial features (facio-) and skin (cutaneous).  It is seen with equal frequency in males and females and across all ethnic groups.  Children with CFC syndrome may have certain features that suggest the diagnosis, such as relatively large head size, down-slanting eyes, sparse eyebrows, curly hair, areas of thickened or scaly skin, and small stature.   Most will also have a heart defect.

In Jacques’s case he has the following symptoms:

An ASD (Atrial septum defect – hole in his heart)

Large head, low set ears, down-slanting eyes, curly hair, small ear and nose canals.

He also gets ill very easily, and this of course wreaks havoc with his sugars.

He was also on oxygen at home till he was 3 years old.

He is not walking yet, but is very near, he is walking with help.  He is also not talking yet.  He gets occupational and speach therapy once a week.

But even with all of these health challenges, he is still the sweetest and kindest little boy, and we love him to bits!