Moderate Becoming Good Later
Katie Carr
My Story
Both of my brothers, Marcus and Toby, were born with Fanconi Anemia. They lived full lives but Marcus died in 2017 and Toby in 2022.
When Marcus died aged 38, Toby decided to take on the challenge of sea kayaking in all areas of the Shipping Forecast. He called it “Moderate Becoming Good Later”. He started his trip in May 2018 and continued in 2019 and 2020. In the summer of 2021, having kayaked in 17 of the 33 sea areas., Toby was diagnosed with uncurable liver cancer.
Between his diagnosis and his death at 40, Toby signed a publishing deal for his story and remained hopeful that he would find a way to complete the challenge and write the book. Fate sadly, had other plans. Toby did not manage to write anything more than the book proposal, which contained 3 chapters (not the first ones), but he had recorded his trips in detail, in notebooks, on video, photos, voice recordings, blogs and messages.
When I found all this after he died, I was convinced I would be able to write the book. I called the publishers and asked them not to cancel it. I spent a year piecing together Toby’s challenge and writing his story in his voice. Then another half year, creating maps and videos and publicizing the book. “Moderate Becoming Good Later” was published by Summersdale on June 8th 2023.
While working on the manuscript, I realised that Toby had, in fact, left me two challenges: the book and the adventure. I was keen to get outside after a year and a half at my desk, so decided to try to finish his Shipping Forecast challenge as well. At the time I had only been in a sea kayak in a swimming pool. I also live in Spain and have a young family. So, I knew it wasn’t going to be easy!
I picked up Toby’s kayak and gear from his garage in Cornwall in early March 2023 and since then have kayaked in England, Wales, Ireland and Scotland. Last year I completed 7 areas: Lundy, Irish Sea, Fastnet, Shannon, Rockal, Malin and Hebrides. 2024 will see me complete the 4 remaining areas, ending in Fair Isle in the Shetland Islands in July 2024.
While kayaking in Ireland and Scotland, I met some inspirational characters asked who I was fundraising for. “No one” was the sad answer. When I started kayaking, we’d only just finished gathering money from Toby’s memorial page and didn’t want to bother people for more. Now, thanks to the book, so many more people know about his story, I’m feeling confident about finishing it (despite my still-not-great kayaking skills), so I feel it is time.
Toby and Marcus never wanted to be defined by Fanconi Anemia, but it is what cut their stories short. Toby hadn’t chosen a charity to support in his trip, but I feel sure he would have chosen Fanconi Hope. The charity uses the money to fund research on Fanconi Anemia and to support those living with the condition and their families. The more we can find out about it, the more chance younger generations have to live longer lives (and perhaps finish the challenges they set themselves, rather than leaving their older sisters to do it!)
-
Target
£5,000
-
Raised so far
£516
-
Number of donors
12
My Story
Both of my brothers, Marcus and Toby, were born with Fanconi Anemia. They lived full lives but Marcus died in 2017 and Toby in 2022.
When Marcus died aged 38, Toby decided to take on the challenge of sea kayaking in all areas of the Shipping Forecast. He called it “Moderate Becoming Good Later”. He started his trip in May 2018 and continued in 2019 and 2020. In the summer of 2021, having kayaked in 17 of the 33 sea areas., Toby was diagnosed with uncurable liver cancer.
Between his diagnosis and his death at 40, Toby signed a publishing deal for his story and remained hopeful that he would find a way to complete the challenge and write the book. Fate sadly, had other plans. Toby did not manage to write anything more than the book proposal, which contained 3 chapters (not the first ones), but he had recorded his trips in detail, in notebooks, on video, photos, voice recordings, blogs and messages.
When I found all this after he died, I was convinced I would be able to write the book. I called the publishers and asked them not to cancel it. I spent a year piecing together Toby’s challenge and writing his story in his voice. Then another half year, creating maps and videos and publicizing the book. “Moderate Becoming Good Later” was published by Summersdale on June 8th 2023.
While working on the manuscript, I realised that Toby had, in fact, left me two challenges: the book and the adventure. I was keen to get outside after a year and a half at my desk, so decided to try to finish his Shipping Forecast challenge as well. At the time I had only been in a sea kayak in a swimming pool. I also live in Spain and have a young family. So, I knew it wasn’t going to be easy!
I picked up Toby’s kayak and gear from his garage in Cornwall in early March 2023 and since then have kayaked in England, Wales, Ireland and Scotland. Last year I completed 7 areas: Lundy, Irish Sea, Fastnet, Shannon, Rockal, Malin and Hebrides. 2024 will see me complete the 4 remaining areas, ending in Fair Isle in the Shetland Islands in July 2024.
While kayaking in Ireland and Scotland, I met some inspirational characters asked who I was fundraising for. “No one” was the sad answer. When I started kayaking, we’d only just finished gathering money from Toby’s memorial page and didn’t want to bother people for more. Now, thanks to the book, so many more people know about his story, I’m feeling confident about finishing it (despite my still-not-great kayaking skills), so I feel it is time.
Toby and Marcus never wanted to be defined by Fanconi Anemia, but it is what cut their stories short. Toby hadn’t chosen a charity to support in his trip, but I feel sure he would have chosen Fanconi Hope. The charity uses the money to fund research on Fanconi Anemia and to support those living with the condition and their families. The more we can find out about it, the more chance younger generations have to live longer lives (and perhaps finish the challenges they set themselves, rather than leaving their older sisters to do it!)
