During the day, she works hard as an HR assistant from the home she shares with her parents. In the evening, she uses Zoom and WhatsApp to keep in touch with her friends, and tentatively making plans to get out more and meet with friends.
However, Amy, who lives in Newport, is also battling a chronic congenital heart condition and has done so since she was born 21 years ago. Lacking a left ventricle, with a hole in her heart, she had her first surgery as a Fontan patient at 3 days. Since then, she has endured numerous operations and many, many days in hospital. She has never let her condition define her though, and now she finds ways to turn her experience into something that can be shared and benefit others.
Amy’s first memory is of being at school and having to carry around a pacemaker which was “more the size of a battery pack than the iPod size it is today”. But, she says, she never let it bother her and she always “just got on with it.” Until the age of 11 she led a pretty normal life with no major operations or hospital visits. A massive sports fan and huge Welsh rugby supporter, she tried her hand at everything, and continues to this day as a volunteer at the British Transplant Games in Newport in 2019 and a Disability Swimming Coach.
When the time came to choose which path to take upon leaving school, Amy was adamant she wanted to go to University. And she did, learning to drive so she could drive herself around and about and enjoying an almost full year at Southampton University as an undergraduate. There she learnt about letting go, having fun and living each day as it comes, as an adult in its truest sense.
2019 was a tough year though (not her words!), and Amy developed a range of complications that led to a record number of stays in hospital, surgery, and blood transfusions. She has just been through another major operation on the horizon.
This experience has brought a realisation:
“As a child there was always so much support different games, shows, entertainment, gifts, day trips – the lot. Yet as an adult aside from a TV and a few books, there is barely anything. You are left to entertain yourself and then you start to realise how much this affects your mental and emotional health & wellbeing.
“For a young adult this is quite a thing and the realisation of the huge transition that exists between being a paediatric patient and then becoming an adult led her to think about what she could do to help this change.”
So, with the support of Daring to Dream, she decided to launch a fundraising venture to help provide the ‘little things that really matter’ that include ward-based resources and activities specifically to help support the emotional wellbeing of other young adult cardiac patients.
1 in 1000 children in the UK are born with a congenital heart disease, and for the first time, we are seeing more survive into adulthood. Surely, this means that this growing population deserves a little more support.
Donations are welcome online (https://daringtodream.wales/).
“The Daring to Dream Ball and Auction hosted by Amy Penn” is now scheduled for 10th September 2022 at voco St David’s Hotel. More news coming soon!