Hi, my name is Daniel & im attempting to raise funds for my 18 year old daughter who suffers from a rare genetic heart condition lesser known as C.P.V.T.

The condition itself is not widely known, but to my families knowledge, only up to 3 known cases are in the UK and unfortunately my daughter is one of them.

It is best described as life threatening with the chances of survival slimmer in younger people, just for clarification we have been on this train for nearly 10 years and only found out how servere it is 3 years ago.

It's so rare, that when she has an "episode" it carries seizure like symptoms, pale skin, loss if breath and loss of body control & function, you would almost appear to have something minor as low blood sugar but infact it could mean something far worse if not looked into. We had sought help over the years from various health care professionals in the UK & not a single one being able to pin-point the cause of the "episodes" she was having. More severely being reported to social services by a doctor at the great western hospital in Swindon for child endangering, following a bad fall while at her school and causing a head injury. Following this, an amazing person from Bristol Royal offered to help & pass on the information to her staff and low and behold, within a week she was admitted to Bristol and the journey to recovery started.

The staff at Bristol have been absolutely amazing on this journey, but unfortunately as my daughter is now 18 she has been transferred to Oxford for ongoing care. As early as last friday (12/09/2025) we have now been told that she will not be able to enjoy things as a young adult that the rest of us take for granted. She won't be able to drive, potentially unable to fly, enjoy days out with friends and family, as she is vastly restricted & she could collapse again but this time she may never wake up.

The main purpose of this fundraiser is simple, we as a family want to be able to cross off her bucket list as best we can, while she is still with us enjoying what we all currently have as best as we all can. We would also like to donate remaining funds to Bristol Royal hospital, to help towards things that my wife and I struggled with in our time there, for example, parking fees, accommodation for families if they are unable to travel home every day, food, entertainment while staying in hospital, regardless of the length of stay.

Lastly, it would mean the world to us all if we could travel the world and meet others, young and old who also have this condition (C.P.V.T) and make lasting friends and spread awareness of the severity and challenges this condition brings.

Thank you for your time and generosity and may you be apart of our friends and certainly family going forward.

Thank you