Tobys Page

Toby's Story

Toby was a 16 year old boy on the brink of adult hood. Just like all 16 year olds he loved life and lived it to the full. In the summer of 2012 Toby had an accident whilst on holiday in Cornwall. Sadly he died as a result of this accident but he has left us a legacy that we are proud to promote, #tobysgift.

#tobysgift started when he gave the gift of life. At the age of 14 he had ‘the’ discussion with us so we knew his wishes. Out of all the decisions we have had to make since his death, that was the easiest and that was one of the many gifts that he has given us. Toby gave the gift of life to four others. He gave his kidney, his liver, his kidney with pancreas and his heart. If you listen very carefully in the still of the night you can still hear is heart beating, bringing happiness to a whole new family.

We now through #tobysgift want to promote the value of organ donation, not only to the recipients but to the donor families, and also to promote the importance of having the discussion with family members so if your worst nightmare comes true it is one decision that you do not have to think about.

Through promotion comes donation, people are very kind and like to show their support in many ways so we identified a charity that we would like to support. We chose the Cystic Fibrosis Trust. One of Toby’s friends, Cole has cystic fibrosis. Toby talked to us a lot about Cole and his condition, the limitations that it made on the quality of his life and also the longer term impact. Toby spent time researching on the internet and educated us in something we knew little about. Cole taught Toby to live for today and make the most of all you are given so it feels very appropriate that we should give some of that back.

#tobysgift - promoting having the discussion about organ donation, raising funds for the Cystic Fibrosis Trust

Cole's Story

An extract from the interview Cole did for the Leigh Reporter

THE friends and family of tragic teenager Toby Hart are gearing up for their charity skydive alongside Leigh MP Andy Burnham. Shadow health secretary Mr Burnham agreed to parachute jump out of a Red Devils plane to raise money for the charity set up by Toby’s parents, Graham and Sally, after his death last year. The intrepid group of thrill seekers, which includes Graham and a host of the 16-year-old’s pals, will also be raising money for the Cystic Fibrosis Trust. Toby, who died in a cliff fall accident while on holiday with his family in Cornwall last summer, was best pals with Cole Moores, who suffers from CF. The 21-year-old, who met Toby when the pair worked at Topman in the Trafford Centre, said:

“I’m trying not to think about the actual jump too much to be honest, the reality of it will probably hit me the day before. Toby was such a confident lad, that was the first thing that struck me about him. I didn’t really know Graham and Sally before but since the accident we’ve become close. When they said they would also be raising money for the CF Trust, I was quite overwhelmed.”

Student Cole, who lives near Astley, has suffered from the condition since he was a child but his life has been improved with the introduction of thedrug Kalydeco. He said: “It is mainly a chest condition but it can affect different organs. The drug eventually becoming available on the NHS has made a big difference. In the past I’ve required regular hospital visits and since I’ve been using Kalydeco I have not had to go in so regularly. It’s very exciting what we’re doing, I think what Sally and Graham are doing for Toby’s Gift and raising awareness of organ donation is brilliant. I was diagnosed with CF at the age of 6, I remember very little of life without having it. It was probably harder for my family than it was for me in the beginning; having to remember when/what tablets I was due, trying to keep me interested in looking after myself without really knowing why at that age. As well as feeding me a high fat diet, hospital appointments, prescriptions, physiotherapy, operations, hospital admissions and looking after me whilst having other illnesses, due to having a low immune system. My parents basically altered their lives around me; I can't really say growing up with CF was difficult, because I don't know any different. I imagine my family would though. In a day to day life I try not to let it bother me too much. 30+ tablets a day, a few nebulised antibiotics, as much exercise as possible and at least 5 or so hospital admissions a year, each for a two week spell. My work is brilliant in supporting me, by giving me time off for appointments, my friends are just the same, taking a keen interest in how everything's going for me. Now with my new drug I am getting a lot better as it really helps to keep me healthy for longer!”

Toby's Bench

Toby died in a beautiful little village called Cadgwith Cove in Cornwall. If you have never been their then do, it has the clearest blue water and the prettiest of views. It is also the home of some of the most caring and giving people we have had the pleasure of meeting. The kindness of strangers is a very powerful thing. The support they gave us on that day and since has been a great comfort to us. We wanted to give something back but also to have a lasting memorial to Toby in the last place we were with him, something we could go and visit but also something that would give pleasure to others. A bench was perfect, It does not look over the cove where Toby died but to the village, the pub were we ate, the beach that we sat on, the last happy memories that we have. It is a beautiful bench, it is inscribed ‘Sit here and smile, he was having fun’ because he was and always did.