A cup of tea with... Ellen
Ellen is off on a trip of a lifetime to Argentina to compete in the World Transplant games. This is her story so far….
Dream child Ellen has had an inspirational journey since we fulfilled her dream of visiting Heston Blumenthal’s Fat Duck Restaurant and have a look behind the scenes in 2012. We wanted to share this with you!
One of triplets, Ellen was born 11 weeks early on 8th April 1998 along with her two brothers Thomas and George. Ellen and George weighed 3.5 lbs. and Thomas weighed 1.5 lbs. They were cared for in the special care baby unit at St Michael’s hospital in Bristol. Ellen suffered kidney failure when she was 5 days old and we were told to expect the worst. She was very unwell, something had caused a blood clot in the blood vessels leading to her kidney and she had renal failure. However, due to excellent medical care she pulled through and both Ellen and George were discharged from hospital aged 3 months. Unfortunately Thomas was very unwell and died aged 4 months.
Because of her kidney failure Ellen was tired a lot and struggled at school but managed well taking only medication until her teenage years. She had excellent care from a specialist renal team at Bristol Children’s hospital .
Her kidney function deteriorated as she got older and she was placed on the kidney donor waiting list in December 2011 and then had to start dialysis in April 2012. We did this at home and it involved her being attached to a machine for 12 hours a day, overnight, which did the work of her kidneys. This was very limiting for Ellen as she had to go to bed early and she couldn’t go to friends’ houses for sleepovers. It also made her very tired and she found it hard to participate fully in normal activities. Her school work suffered although she tried really hard not to miss too much school.
We had a life changing call on 22nd December 2012 when the transplant coordinator rang and told us there was a possible match for a kidney. We do not know any details about the donor but recognise that their family had to make a very brave decision to donate their loved ones organs at a very traumatic time for them. At the time of the call Ellen was in Centerparcs with her dad and George and she had to rush to Bristol Children’s hospital to undergo tests and then wait to see whether the kidney was a match. We had an agonising 24 hour wait while tests were undertaken but finally got the go ahead in the early hours of 23rd December 2012. There could never be another Christmas present to match that!
This wonderful gift gave Ellen a new lease of life...soon after the transplant she felt so much better. She had more energy and, once she got back to school she started she was speeding ahead with her studies.
In 2013 Ellen took part in the British Transplant Games in Sheffield, 8 months post transplant, along with other young transplantees. We did lots of fundraising for this and also for Dreams Come True by making cakes and selling them to family and friends. We also held a Christmas fayre.
Ellen used her new found energy to start training with our local swimming club and competed again in the British Transplant Games in 2014 winning a silver and bronze medal in her events. Following this success, in October 2014 we received a letter telling us that Ellen had been selected to represent Team Great Britain in the World Transplant Games in Argentina in August 2015.
This amazing opportunity meant we would have to raise £4000 for Ellen and her dad to go so we again made lots of cakes and held a Christmas Fayre in 2014. Just after we started all the fundraising we also had news that Ellen’s step dad, a nurse, would be flying off to Sierra Leone as part of the British health response to the Ebola Crisis. He was away for 7 weeks over Christmas so it was a very busy time!
At the beginning of August this year Ellen competed in the British Transplant Games again in Newcastle, smashing her personal best times and winning a gold medal and 4 silvers. She has been training hard with the local swimming Club as well as attending Team GB meets at Warwick University.
Ellen will be battling for a medal in the swimming events in Argentina in one week’s time and will be one of over 1,000 transplant athletes taking part to raise awareness both here in the UK and internationally, of the need for organ donors, and to celebrate their second chance at life. Athletes are selected following their outstanding performances at the British Transplant Games held annually around the UK.
Without Ellen’s life-enhancing Kidney Transplant she wouldn’t be competing. “The Games have played an important role in helping me live a full and active life and to be more confident following my successful transplant,” explains Ellen “This event is a place to celebrate the gift of life and an opportunity to thank our donors and their families. The whole team is looking forward to the buzz and excitement and plan to bring back a load of medals.”
107 Transplant athletes and 100 supporters will descend on Argentina, and Ellen is one of 12 junior athletes.
The World Transplant Games, supported by the International Olympic Committee, represents the largest organ donor awareness event in the world, featuring a week of 13 sporting events. Team Great Britain will join 1000 other transplant athletes from 50 countries across the globe.
Lynne Holt, Team Manager and Trustee at Transplant Sport said: “The World Transplant Games is a great opportunity for our transplant athletes to compete at an international level and to share their stories and inspire people to sign up to the NHS Organ Donor Register. The athletes should now be in peak condition in preparation for the World Transplant Games in Argentina in 1 week. The British and World Transplant Games would not be possible without the generosity of the organ donors who ensure that these athletes can demonstrate the benefits of lifesaving transplantation.”
“Not only are these athletes ambassadors for our country, but they are also representing the charity, Transplant Sport, and hope to raise more awareness here in the UK and globally, of the need for more people to sign on to the Organ Donor Register and express their wishes with family and friends.
“It is always a little daunting competing at the World Transplant Games but with the help of those who have been before, together with the coaches, captains, management, medical and physio team, the experience will ultimately be a rewarding one for all involved! Being an athlete on the team is an enormous commitment of both time and money. For the past 10 months the athletes have been busy keeping fit, regularly training in their sport, attending regular team training meets, doing publicity and trying to raise the £2k per person to get there! However, the opportunity to represent their country, celebrate life and in doing so, paying tribute to their donors, is the goal”
In 2013 the team returned home from the World Games in Durban, triumphant, boasting a total of 279 medals and claiming the overall winning title for the 17th World Transplant Games. Expectation of retaining this title is high for the team this year.
More than 8,000 people in the UK are currently waiting for a transplant and sadly, three people die waiting every day. But with only 32 per cent of the UK population actually registered as organ donors, more work needs to be done to raise awareness of donation and to urge those on the donor register to share their wishes with loved ones.