Hi everyone,

Thank you for visiting our Just Giving Page for Elicia. Elicia is our 10 year old daughter who was diagnosed with Jacobsen Syndrome when she was 7. Prior to that we were told it was just Global Learning Delay and ADHD. We wanted to delve further as we thought it was Williams Syndrome but later found that it was a very rare condition indeed. There are only 200 known cases in the world. 1 in 100,000 are born and there is a high mortality rate.

Most cases mean that there is Global Learning Delay, Squint, Heart, Stomach and Kidney defects. ADHD and Autism. She suffers from chronic stomach problems. All dependent on the amount of the 11q chromosone which is missing. Elicia's termination on her 11q chromosome would have meant that she would be unable to speak, move and learn. However, as she has more on her Chromosone 12 she has been able to do a lot of things that others may not. She loves singing and dancing, baking cakes and high heels. She is a very happy child and loves to chat which is fine, but to strangers, that's where the obvious vulnerability lies. She's entering into puberty, has a learning age of 6 and we need more intervention from professionals to ensure that we can protect her.

Anyway , we have touched base Dr Paul Grossfield, who is a Professor of Paediatrics at UCSD School of Medicine in America. He is the leading researcher of Jacobsen Syndrome in the world. He heads up the International 11q Conferences in San Diego and Germany. The next being in 2018. We would dearly love Elicia to meet him as there are advancements with interventions which are continuously being researched which would enhance this incredible girl's life x

Thank you for your time