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Simon Bolding
Simon Bolding
Story
HHi, Hi, Hi, i,
I have signed up with a team to hike the length of Dirk Hartog Island, off Denham, Western Australia, in support of “The Pirate Ship Foundation,” who assist fund research into better treatments, and ultimately, a cure for childhood brain cancer.
The week long hike in May 2019 has never been done before and will cover over an estimated 115km of the rugged coastline and inland sections of Dirk Hartog from its southern to northern tip, finishing at the site of the historic 1616 landing of Dutch explorers.
We will be carrying all of our own gear on our backs – that’s food, clothing, and tents, everything we need for the entire week! Fishing for our dinner and only having access to fresh water at designated drop points across the island (which are up to 29km apart) making this is a true survivor challenge.
Why??
For the thousands of families that are affected by this disease each and every year. Awareness drives change, and unfortunately still the majority of people don’t know that brain cancer kills more Australian children that any other disease. It is a complex disease that has not received the funding or attention that it deserves, and as a result survival rates and quality of life for survivors has lagged significantly against other childhood diseases and cancers.
It’s incomprehensible for myself to understand the effect that having a child diagnosed with this disease must have. The story below is from my friend’s wife, which describes her and his unwavering dedication to their beautiful daughter Abigail, describing the heartache, hope, faith and steadfastness they have for finding a cure:
“October 21st 2019 is an important date this year. It will mark 6 years since we were told our beautiful Abigail (then 4 ½) had brain cancer. And if this year goes as it should, it will also mean she is 5 years post-treatment, and therefore considered “cured”….. of the brain cancer anyway……
When she was first diagnosed, she endured a grueling regime of treatment - 8 1/2 hours of surgery to remove most of the tumour, 31 radiation treatments (delivered daily under general anesthetic), and 6 months of chemotherapy; together with countless infusions, transfusions and fighting infections continually.
Despite the fact that she is firstly – here; but also kind, witty (sometimes cheeky), brave, strong – and generally my hero - her treatment has comes at a heavy cost. There’s not a single area of her body not impacted. She needs hearing aids and started her summer holidays with cataract surgery to her right eye (she’s having the left one done when school starts). She needs daily injections of growth hormone to grow. Her other hormones will need artificially restraining or stimulating (there’s a high chance she’s infertile as well). Her thyroid is shriveled so she’s on tablets for that. She’s permanently lost hair and about 30% of her taste, and some ability to swallow. She has been diagnosed with a disability – an acquired brain injury, which basically means she has neurocognitive impairment making it harder to learn, play and sometimes communicate and keep up with what’s happening around her mentally as well as physically. She is becoming increasingly aware of her differences and will often tell me how she wishes she was like everyone else (after everything she’s been through, this one breaks my heart more than anything). This doesn’t magically get better or go away over time. So many people assume that cancer free means everything is ok – and while so many of her symptoms are manageable, I believe that no child (or their families) should go through this – and that there has to be a better way.”
The small challenge that we face on our walk, is nothing compared to the challenge that Abigail and so many like her face on a day to day basis. Please help support me and “The Pirate Ship Foundation,” in their vision of happy, healthy children free of brain cancer through a fully tax deductible donation at – https://dirkhartogislandsurvivor.gofundraise.com.au/page/SimonBolding
For further information on The Pirate Ship Foundation, its cause, ways to get involved in fundraising and the research programs funded please go to www.pirateshipfoundation.com.au
Thank you for your support.
Simon
Hi,
I have signed up with a team to hike the length of Dirk Hartog Island, off Denham, Western Australia, in support of “The Pirate Ship Foundation,” who assist fund research into better treatments, and ultimately, a cure for childhood brain cancer.
The week long hike in May 2019 has never been done before and will cover over an estimated 115km of the rugged coastline and inland sections of Dirk Hartog from its southern to northern tip, finishing at the site of the historic 1616 landing of Dutch explorers.
We will be carrying all of our own gear on our backs – that’s food, clothing, and tents, everything we need for the entire week! Fishing for our dinner and only having access to fresh water at designated drop points across the island (which are up to 29km apart) making this is a true survivor challenge.
Why??
For the thousands of families that are affected by this disease each and every year. Awareness drives change, and unfortunately still the majority of people don’t know that brain cancer kills more Australian children that any other disease. It is a complex disease that has not received the funding or attention that it deserves, and as a result survival rates and quality of life for survivors has lagged significantly against other childhood diseases and cancers.
It’s incomprehensible for myself to understand the effect that having a child diagnosed with this disease must have. The story below is from my friend’s wife, which describes her and his unwavering dedication to their beautiful daughter Abigail, describing the heartache, hope, faith and steadfastness they have for finding a cure:
“October 21st 2019 is an important date this year. It will mark 6 years since we were told our beautiful Abigail (then 4 ½) had brain cancer. And if this year goes as it should, it will also mean she is 5 years post-treatment, and therefore considered “cured”….. of the brain cancer anyway……
When she was first diagnosed, she endured a grueling regime of treatment - 8 1/2 hours of surgery to remove most of the tumour, 31 radiation treatments (delivered daily under general anesthetic), and 6 months of chemotherapy; together with countless infusions, transfusions and fighting infections continually.
Despite the fact that she is firstly – here; but also kind, witty (sometimes cheeky), brave, strong – and generally my hero - her treatment has comes at a heavy cost. There’s not a single area of her body not impacted. She needs hearing aids and started her summer holidays with cataract surgery to her right eye (she’s having the left one done when school starts). She needs daily injections of growth hormone to grow. Her other hormones will need artificially restraining or stimulating (there’s a high chance she’s infertile as well). Her thyroid is shriveled so she’s on tablets for that. She’s permanently lost hair and about 30% of her taste, and some ability to swallow. She has been diagnosed with a disability – an acquired brain injury, which basically means she has neurocognitive impairment making it harder to learn, play and sometimes communicate and keep up with what’s happening around her mentally as well as physically. She is becoming increasingly aware of her differences and will often tell me how she wishes she was like everyone else (after everything she’s been through, this one breaks my heart more than anything). This doesn’t magically get better or go away over time.
So many people assume that cancer free means everything is ok – and while so many of her symptoms are manageable, I believe that no child (or their families) should go through this – and that there has to be a better way.”
The small challenge that we face on our walk, is nothing compared to the challenge that Abigail and so many like her face on a day to day basis. Please help support me and “The Pirate Ship Foundation,” in their vision of happy, healthy children free of brain cancer through a fully tax deductible donation at – https://dirkhartogislandsurvivor.gofundraise.com.au/page/SimonBolding
For further information on The Pirate Ship Foundation, its cause, ways to get involved in fundraising and the research programs funded please go to www.pirateshipfoundation.com.au
Thank you for your support.
Simon
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The Pirate Ship Foundation Ltd
The Pirate Ship Foundation is a bold and passionate community that funds vital research into childhood brain cancer through a range of initiatives, adventures, events and partnerships.
Childhood brain cancer kills more Australian children than any other disease.
The identification of improved treatment options for children with brain cancer is our primary objective, ultimately leading to a cure.
We believe it is important for our community to understand the impacts of a brain cancer diagnosis to a child and their family. Even in the best possible cases, treatments are so damaging to a developing brain that they leave shocking, irreversible and life long-side effects.
We know that together we can support research that will deliver better outcomes and make a significant difference to those children and their families.
Funds are invested directly into childhood brain cancer research programs, including to the Brain Tumour Research Program at Telethon Kids Institute in Perth.
To learn more about the Foundation and to get on board with how you can help – head to www.pirateshipfoundation.com.au or contact us at ahoy@pirateshipfoundation.com.au.
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