This JustGiving page has been set up by Eliza, aged 20, to raise funds for Royal Papworth Hospital, the home of transplant research and ground breaking transplant procedures, and to increase awareness of the NHS Organ Donation Register.
I was born with a rare genetic heart condition called Danon's Disease, not diagnosed until I was 12 and in hospital having contracted a respiratory virus. Up until the age of 18 I was able to live a relatively normal life, completing my A-levels and embarking on a degree at the University of Falmouth. Unfortunately throughout the first term at University my health deteriorated considerably, forcing me to put my education on hold. After this my cardiomyopathy progressed causing me to go in to heart failure.
Due to the severity of my heart failure back in October, the cardiologists at Royal Papworth decided that my best chance of survival was to have a heart transplant and so I was placed on the Heart Transplant List. The last two months (December 2018/January 2019) have not been easy for me with three failed transplant attempts, all cancelled at the last minute, as well as a severe bout of pneumonia.
In the last week of January, once I had recovered from the pneumonia, I was admitted to Royal Papworth and placed on the Emergency Heart Transplant List. Owing to my rarer blood type (O-negative) and height, the two main factors used to match the donor heart with the receiver, it was likely that I will have to wait longer than most for a transplant.
I initially came up with the idea with my friends and family, of raising funds for Royal Papworth Hospital through the Torbay Half Marathon.
My aim is to raise £30,000 for the Royal Papworth Hospital Charity's DCD Transplantation Fund. We have chosen such a high target as this is the cost of one Transmedic portable perfusion machine. These machines, which can only be used once are an essential element of transporting a DCD heart between the donor and recipient. At this time the NHS does not support the DCD transplant program and therefore it is solely funded by the Royal Papworth Hospital Charity.
Whilst waiting in Hospital on the urgent heart transplant list
I have now had my transplant and am now on the road to recovery! Lots of hard work to come but the transplant team are positive.Thank you to all the amazing NHS staff who have helped on my journey so far. The generosity of supporters has been heart warming and we cannot thank you enough. But remember without Royal Papworth's Charity DCD appeal I may not have been offered this gift, because the use of the specialised beating box is not funded by the NHS. Lets keep pushing to ensure others get the same access and chance of a new life.
A couple of weeks later..
I have now be discharged from Royal Papworth Hospital and will have to visit weekly and then fortnightly for check ups. This includes Bloods, EGCS and Biopsies which checks that the heart is not being rejected or failing. Having been out for nearly a week now, just the normal day to day things such a shopping and walking are feeling so much easier. Thank you again for all the support I have received so far. Our fundraising team is now around 40 strong and growing every week. This year is packed to the brim with fundraising events and we can't wait to get started!
Having just had biopsy number 7 my next hospital appointment is two months away! This may not sound very long but since being discharged from hospital my visits from Cornwall to Cambridge for biopsies were once weekly and then monthly (involving a lot of driving!). The fact that the pressures in my body are very low and the doctors are reducing my appointments is great sign. Day to day I still have to take it easy but focus on simple things like exercise and good eating to make sure my body is as healthy as possible for my new heart! Every time I have a positive appointment or a particularly fun day which I would not have been able to experience prior to the heart transplant I always think about my donor and their family and in my head thank them for this amazing gift.. The gift of life.
I decided to set up this JustGiving page to keep track of my fundrasing efforts and on behalf of the following fundraisers:
A massive thank you goes out to...
- Nigel Bell (My Dad), Molly Pavey, Lani Lawrence, Chris Durham, Elana Albery, Karen Albery, Aidan Tolley, Keith Duffy, Jason Eddy, Colin Bell, Katie Squires and Gemma Tooze who tackled London's Super Spartan and Torbay's Half Marathon in June 2019!
- Elizsabeth Durham - Fundraising over £2,000 through a groovy Rock and Soul night in South Devon, July 2019.
- Pete Ellicock- Who organised Truro's Racket Ball tournament in April 2019 and raised over £700!
-Ed, Rueben and Mish who raised £1000 in Melbourne by holding a quiz night and raffle.
- South Dartmoor Community College who raised over £500 by holding a mufti day in aid of 'Let the beat drop' in March 2019.
- Tina Bell and Molly Pavey for attending a car boot sale in rain and wind to raise an impressive £200.
- Gemma Tooze for organising a Horsey car boot sale and raffle which raised over £200!
- The Penzance to Papworth cycling team- Nigel Bell, Phil Northcott, Martin Higman who cycled over 300 miles in 24 hours to raise vital funds for 'Let the Beat drop'. Thank you guys!
When donating though this page, please kindly name the fundraiser you are supporting via the comments.
For information on the organ perfusion equipment we are funding see link below:
For more information on organ donation and how to register (it only takes two minutes…) please follow the link below:
This JustGiving page will also serve as a central fundraising hub for several more events that friends and family will be taking part in during the coming year.
The events planned so far are as follows:
17th March- Melbourne Trivia Charity Evening (Ed, Mish, Rueben and Friends)
13th April - Truro Racket Ball Charity Open (Hosted by Nigel and Pete)
3rd May- Penzance to Papworth. 24 hour cycle non stop in a three man relay (Nigel with two friends Martin Higman and Philip Northcott from Truro Cycling Club)
22nd June – Super Spartan Adventure Race (Chris, Aidan, Deaglan)
23rd June – Torbay Half Marathon (Nigel, Chris, Lani, Molly, Bram, Elana, Karen, Katie, Gemma, Colin, Jason, Mark H, Aidan, Kieth, Jodi, Vinnie, Amber, Adam, Becky, Loz, Timmy G! )
13th July- 'Rock and Soul' In Abbotskerswell Village Hall TQ12 3YF. Bar, food, raffle and music from 'The Commitments' and support band 'Mother's Ruin'. Tickets coming soon.
24th August- Charity Cream Tea @ Teigngrace Village hall and walk.
13th October - Melbourne Half Marathon. Big thank you to Reuben, Harry, Ed, Barbs, and Andrea! Great work from the team down under....
If anyone would like to help fundraise and host their own event please get in contact at firstname.lastname@example.org. We are becoming one big fundraising family which means more the merrier!