‘MEET VANESSA AND JACOB!’

Vanessa and Jacob both suffer from a very rare genetic disease. They are the first known cases of duplication chromosome 14q32.33. They both have low muscle tone, vision problems, weakened immune systems, asthma, OCD, ADHD, and heart defects.

Vanessa has non alcoholic steatohepatitis, glaucoma, her right side is 2 inches shorter than her left, she has obesity through the trunk, and is bipolar. Jacob has Atrial septal defect and an anurysm in his heart, severe asthma, developmental delays, and has mild autism.

We have been told that there is no other case of this illness. Despite what they have been through and continue to go through they are strong children. They keep their chins up and smiles on their faces. They know that they are different from other kids but they are loved for who they are.

Our future is unknown, so far no one has been able to tell us what the future holds but our goal is to make more and more people aware of this illness and hopefully someone out there can tell us something. But for now we have God as our guide and he knows all about it.

Barbara Jennings
Kentucky