Jessica get to America for life changing heart surgery

Hi, my name is Jessica and I am 10 years old.

I was born with Ebstein's Anomaly which is a rare congenital heart defect that involves the Tricuspid Valve and the right ventricle. Ebstein's Anomaly only accounts for about 1% of all congenital heart disease and, within that 1%, there are extreme variations in severity and associated complexities. This means that there is no 'one size fits all' approach to treatment.

I have a severe form of Ebsteins which means that my Tricuspid Valve is severely displaced, resulting in regurgitation between the top and bottom chambers of my heart. The right side of my heart is growing larger and, left unchecked, will eventually lead to heart failure. I suffer with rapid heart rates and arrhythmias, shortness of breath and struggle with exercise, running around with my friends, and cold or very hot weather.

I have always known that I have a special heart and my Mum and Dad have told me I need surgery. I was told I would have the Cone Procedure which would fix my heart and make it more like everyone else's. The Cone Procedure uses the broken valve's tissue to create a new valve and is the best chance of me having a normal life as I grow older. Having the Cone would also mean it is less likely I will need other surgeries in the future.

The team at Great Ormand Street have been looking after me and are great. They had told my parents that I would be a good candidate for the Cone and we had been planning to have the surgery performed there this year. However, just before Christmas they told us that they were now unable to do the Cone.

This was a huge blow for us as a family as long-term outcomes with alternative procedures are not as great and can further damage the heart in the long-term. We were strongly advised by the Ebstein's community on FaceBook to reach out to one of the two specialist hospitals in the US for a second opinion.

My Mum and Dad reached out to the Da Silva Center for Ebstein's Anomaly at UPMC Children's Hospital of Pittsburgh who are part of UPMC Children's world-renowned Heart Institute. José Pedro da Silva, MD, invented the Cone procedure and his team has been perfecting this approach having performed more cone procedures than any other surgery team in the world. Families from all over the world travel to Pittsburgh to seek care for Ebstein's and they have a fantastic success rate.

The Da Silvas have assured us they can confidently perform the Cone Procedure which would be life changing for me. Without surgery I would probably only live for another 10 to 15 years. Drs. Jose and Luciana da Silva have the expertise to repair valves in even the most complex cases like mine. They give second opinions to many families every year. The Da Silvas have performed more than 400 Cone procedures in their career. In many instances, the Cone procedure surgery is a cure for Ebstein's anomaly.

Hi I’m Tamsin Williams, Jessica’s Mum. Obviously, the costs associated with travelling to America and having the surgery are very high. We are getting help from our family and friends and are re-mortgaging our house but this will not cover the full amount. The funds raised through this crowdfunding will go directly towards paying for Jessica’s surgery at the UPMC hospital and any additional costs that are added on post surgery. I will be managing the funds on Jessica’s behalf and have set up a dedicated account for the funds which will be transferred directly to UPMC where we now have an account. Anything you are able to contribute will really help to get Jessica to Pittsburgh. Thank you