CCTS Winter Cabaret Fund Raising Event

The reason behind the event:

"On the 25th January we attended a regular Autism check up with Raphie’s specialist paediatric consultant. After routine checks, which included listening to Raphie’s heart through a stethoscope, the Doctor informed us that she thought Raphie may have a slight heart murmur. The Doctor said that she would not be doing her job properly if she ignored her finding and didn’t refer him onto a paediatric cardiologist. Although, at the time she had hoped her findings were wrong. 

After a long 6 month wait on the 18th of July Raphie’s appointment with a paediatric cardiologist finally arrived. At the time, we had convinced ourselves that heart murmurs were quite common and our Autism consultant had told us not to worry. Due to this we entered the appointment feeling quite relaxed.

Little did we know that on the 18th July our world would be turned upside down. We were told that Raphie had been diagnosed with a congenital heart defect and he will always remain in heart failure. We were asked to return two weeks later for Raphie to be seen by a specialist team from the Royal Brompton Heart and Lung Hospital. The shock we felt that day can only be described as unimaginable and emotional pain. The one thing as a parent you want to do is to protect your child but that had just been taken away from us. We wanted to swap places with him.

After an agonising further 2 week wait we met with 4 doctors. They repeated the checks on Raphie’s heart and at the age of 6 he was diagnosed with a ‘Functionally bicuspid valve with mild stenosis and mild regurgitation’. 

Raphie will need multiple open heart surgeries throughout his lifetime. His life is now, and will forever be, in the hands of doctors. It is a bitter sweet feeling. Where would we be without the reactive behaviour of the paediatrician from that one check up appointment in January. We are now 6 months later, surrounded by a team of doctors who will see him through life. We felt an air of both gratitude and emotional turmoil for the hurdles that our little boy will have to face. 

Raphie’s life is full of sport. Something that he excels at! However, we have been told that after his first open heart surgery he will not be able to engage in any sort of strenuous sport again. This is due to the dangers and complications of internal injuries, the strain it can put on the heart and the fatigue it may cause. Raphie has always been asymptomatic. We understand that there are so many families that have to go through the agonising pain of their children not making it to a diagnosis.

To celebrate the Candice Conway Theatre School’s 10 year anniversary, we are hosting a Winter Cabaret Fundraising event. We wanted to find a way to provide, both our son Raphie and our Theatre School, with a defibrillator each and all remaining proceeds will go to The British Heart Foundation. With performances from our CCTS students and West End performers we will be making it a night to remember!

It’s been a long Summer of reflection and emotional healing. We want to celebrate, enjoy life and make memories as a family. We understand that we have no control over the future of Raphie’s health but whilst we can make a difference to him and others, we will make it our priority to do so."