'Magical' Lottie's bid to salute life-savers

The world's youngest-ever liver transplant survivor has launched a £10,000 appeal for the memorial which will remember and honour those families who have donated organs of loved ones to save the lives of others.
Her Torquay family know exactly what that emotional and challenging journey feels like - three years after Lottie's transplant her brother Daniel died. His organ donations saved the lives of six people.
Lottie has taken part in campaigns and has been presented with several awards for championing the organ donation cause - only recently her story and memorial project touched the hearts of the Torbay and South Devon NHS Foundation Trust so much they made her an honorary director
Dad Chris says: "Our journey has definitely been full of fear and sadness beyond comprehension but the magic that has ridden with us has also been extraordinary. Individuals have come out of the woodwork and helped Lottie spread the word when they have never been touched by this world."
Lottie has just celebrated her 12th birthday after being born on July, 6, 2011, at Torbay Hospital. Following a perfect pregnancy she entered the world un-breathing and desperately sick.
She was transferred to the RD & E Hospital at Exeter, then Bristol and two weeks later to Birmingham Children’s Hospital where a very rare liver disease, Neonatal Heamochromatosis was diagnosed. Doctors said that without a liver transplant she would survive only two weeks. At that time a suitable liver for Lottie became available, on average, every three months so her chances of getting a transplant were remote and even if she won that lottery, no one in the world had ever transplanted a liver into a child as tiny as she was at 4.1lbs and aged just five weeks old.
Chris says: "We spent a terrifying 15 days watching our little girl slowly running out of time until 15 days later we won all the lotteries at once when a liver became available and the surgeon magicians weaved their magic and did what no one had done before.
"That was all 12 years ago but the memories of those fearful weeks live with us still and Lottie has been involved ever since that time in shouting as loudly as she can about the importance of everyone at least discussing with their loved ones the topic of organ donation. Things have improved little since 2011 and so many people die, even having signed the organ donation register because they haven’t told their loved ones.
"Lottie’s brother Daniel signed the organ donor register on August 13, 2011, the day that his sisters life was saved. Three years later after a devastating accident, Daniel died and his wishes were granted when he saved six people.
"This has motivated Lottie yet further to tell as many people as possible what an amazing thing organ donation can be. She has been involved in numerous campaigns over the years both personally and through The NHS and other organisations, such that she has twice won the Pride of South Devon Award and has been made a ‘Changemaker’ by a National Charity (Superkind)."
Chris revealed: "Around a year ago, after hearing that Torbay Hospital wanted to erect a permanent memorial to organ donors and their families, Lottie offered to fund raise to expedite this project. The memorial has been designed and a fantastic location has been set aside right in the front entrance area to the hospital. The design features Sea Grass as we wanted it to have a strong link to Our Bay Area.
"Lottie has been fundraising, not merely with her hand out, but by making and selling her own home-made Apple Juice, by setting up stalls selling hot chocolate and cakes with her friends and by standing in the freezing cold at car boot sales. For many months she has donated half of her pocket money each week to the cause."
Lottie was invited to talk to the Board of Directors of local NHS Trust and following that and her endeavours, she was made its youngest ever Honorary Director by Trust chairman Sir Richard Ibbotson and chief executive Liz Davenport.
Sir Richard said: "Lottie shared her story with our directors and reduced us all to silence (and some of us to tears) by her courage and her compassion for others. Her wish for a memorial to say thank you to organ donors and their families touched a chord with all of us. I am very proud that we made Lottie an honorary director – she epitomises the values that we hold dear and her vision chimes with our own for better health and care for all. In the NHS’s 75th year, it feels particularly fitting that we recognise the contributions and potential of our young people as we build our brighter future together.”
Dr Nikki Freeman, clinical lead in organ donation at Torbay Hospital, said Lottie was "a little girl who has been through so much". He said: "Her work today is about thinking of the families who have been touched by organ donation, and remembering the people, and celebrating the lives of those who have donated their organs in order to save others. She's a remarkable little girl."
The latest of the Lottie magical moments came when her teacher, Miss Gunner from Stover School, Newton Abbot, decided that the school should support her fundraising efforts. She and a group of the pre-school teaching staff set about organising a sponsored ‘colour run’ at the school which was opened by Sir Richard and the Mayor of Kingsteignton. They were supported by Torbay Hospital Radio and a song written about Lottie 11 years ago was sung live by singer songwriter Nick Tilley (Lottie’s Song, The Gift Of Life).
The run raised an astounding £6,453.00. Lottie finished her years at Stover Pre school with the enormous honour of being awarded 'The Spirit of Stover Award’.
She is out to raise £10,000 for the hospital memorial with more than £7,000 in the bag so far. A website funding page has been set up at www.gofundme.com/f/lotties-organ-donor-memorial-fund.
Lottie says on the page: "When aged only five weeks, my life was saved by a stranger who donated their liver to me. Eleven years on from becoming the smallest person in the world to successfully receive a liver transplant, I never forget my amazing donor, nor all the other people who, together with their families, save the lives of others like me every day.
"Now I'm on a quest to raise money to help erect a permanent memorial so donors and their families are never forgotten and to create a beautiful place for people to reflect on how important organ donation is. Without it, my life would have ended in August 2011."
Dad Chris said: "As we waited day after day after day at Birmingham Children’s Hospital back in 2011, I felt the enormous burden of being a father whose primary job in life is to take care of your children and being totally impotent to do that. I saw around me our extraordinary doctors, nurses, surgeons and other NHS staff brilliantly fighting to keep Lottie alive. I saw above Lottie’s own bed space, world-leading hospital theatres ready to swoop her up and let those surgeons do what they do best yet still we came within hours of losing our tiny little girl, Just through a shortage of organ donors. Unlike us, three people every day would tell a very different story to ours when their fearful wait runs out of time. We just want people to use Lottie’s story to open the door for people to talk to their nearest and dearest about organ donation. When we are gone we don’t need our organs any more. Daniel doesn’t and now his heart beats on in a complete stranger. "
Find out more about organ donation here: www.organdonation.nhs.uk/