Jenna-Faith was born on 26 October 2008.
At 10 months not meeting developmental milestones her pediatrician turned our world upside down suggesting that she may have an underlying syndrome, Noonans Syndrome. At 18 months this was her clinical diagnosis by the geneticists.
An initial DNA test was inconclusive and further DNA testing was carried out she was diagnosed with Cardio-Facio-Cutaneous (CFC)syndrome.
Although the same genetic family as Noonans it is estimated that there are only 300-400 cases worldwide. Every 2 years CFC International hold a conference in the US. We did not get the diagnosis early enough to raise funds for this years' but would love to go in 2015.
It is where families come and meet medical experts. It would be a fantastic learning opportunity It would be an opportunity for us to meet other families living with the condition, learn about the condition from medical experts and help prepare ourselves to make the best decisions we can for Jenna-Faith in the future.
To go though we estimate we need $10,000 - $15,000 and this is where we need the assistance. Please donate to our cause.