Stand Up for 22q - Hayden's journey
Donation protected
Taking on The Monster to raise more awareness of Hayden's condition and to give a little back...
Hello all you lovely people.
On 15 August 2017 I will be taking on the 60 mile (100km) Great Glen Monster Challenge on a stand up paddle board. The route covers the width of Scotland, and runs from Fort William on the west coast, to Inverness on the east coast. The paddle will take me across the the Caledonian Canal, Loch Lochy, Loch Oich and the mighty Loch Ness.
I aim to do this distance in 2 days (it would usually take 3 to 5 days on a canoe) with a paddling time of about 10 hours per day - depending on which way the wind is blowing! Oh, and I'll be doing it on my own.
My goal for this challenge is to create awareness for a genetic condition called 22q11 deletion syndrome which my son Hayden was diagnosed with when he was just a few months old. I would also love to be able to raise some money for a number of charities like Max Appeal that support families living with with 22q11 deletion syndrome.
More about the syndrome
As the name indicates, the syndrome is the result of a tiny piece of missing genetic code from the 22nd chromosome. It can present with a number of different conditions, but some of the more common problems are congenital heart conditions, cleft palate and immunity issues. There are a range of other potential complications including things like digestive problems, scoliosis, and low muscle tone. Development delays and speech problems are prevalent as well.
NHS choices has some more information on the condition, so please follow the link to learn more.
Hayden’s journey: The early days
Hayden was born on 20 February 2010 with his own hidden agenda! Initially he struggled to feed, and not being a very healthy colour, the doctors quickly jumped in to do some checks. What they found changed our lives forever.
Hayden endured bowel surgery at a day old, two open heart surgeries at a week old and another operation on his heart at four months old. We nearly lost him twice and he had a seizure one afternoon which scared the life out of us. We lived between in the hospital throughout this period, relying on hope to keep us going while constantly being faced with our worst fears.
It was following his last heart surgery that Hayden was diagnosed with 22q11 deletion syndrome after the doctors did a specific blood test based on their suspicions that there was an underlying reason for his complications.
We eventually emerged from the curtain of tears, frustration and terror, and watched with pride as Hayden began taking full advantage of the opportunity to grow and thrive. He began crawling, then walking and eventually, even talking. And we loved every minute of it.
More recently...
Hayden has had to have further surgery on his heart. This happened on 15 August 2015, and I can honestly say that I didn't hear the guy complain or cry once throughout the whole thing. Humbling to say the least.
Following this most recent surgery, he has been diagnosed with moderate scoliosis which is currently being monitored and for which he wears a brace.
We don't know what the future will hold, but what I do know today is that he is my best friend, my hero and my inspiration. I also know that we would not have been able to get where we are without the miraculous wonders of the NHS and the amazing men and women working within the system.
We also wouldn't be where we are today without dedicated charities like Max Appeal who provide information, research, support and a chance to connect with other families in similar situations.
So, by doing this challenge I hope to raise some money for these charities, but most of all, I hope to raise awareness of this condition to ensure that these kids and young adults get the support, love and care they require to be able to thrive in their schools and communities, allowing them to live happy and fulfilled lives.
This challenge is for all of them!
Thank you all for your support, and if I see Nessy, I'll try and get a clear HD picture of her!
Hello all you lovely people.
On 15 August 2017 I will be taking on the 60 mile (100km) Great Glen Monster Challenge on a stand up paddle board. The route covers the width of Scotland, and runs from Fort William on the west coast, to Inverness on the east coast. The paddle will take me across the the Caledonian Canal, Loch Lochy, Loch Oich and the mighty Loch Ness.
I aim to do this distance in 2 days (it would usually take 3 to 5 days on a canoe) with a paddling time of about 10 hours per day - depending on which way the wind is blowing! Oh, and I'll be doing it on my own.
My goal for this challenge is to create awareness for a genetic condition called 22q11 deletion syndrome which my son Hayden was diagnosed with when he was just a few months old. I would also love to be able to raise some money for a number of charities like Max Appeal that support families living with with 22q11 deletion syndrome.
More about the syndrome
As the name indicates, the syndrome is the result of a tiny piece of missing genetic code from the 22nd chromosome. It can present with a number of different conditions, but some of the more common problems are congenital heart conditions, cleft palate and immunity issues. There are a range of other potential complications including things like digestive problems, scoliosis, and low muscle tone. Development delays and speech problems are prevalent as well.
NHS choices has some more information on the condition, so please follow the link to learn more.
Hayden’s journey: The early days
Hayden was born on 20 February 2010 with his own hidden agenda! Initially he struggled to feed, and not being a very healthy colour, the doctors quickly jumped in to do some checks. What they found changed our lives forever.
Hayden endured bowel surgery at a day old, two open heart surgeries at a week old and another operation on his heart at four months old. We nearly lost him twice and he had a seizure one afternoon which scared the life out of us. We lived between in the hospital throughout this period, relying on hope to keep us going while constantly being faced with our worst fears.
It was following his last heart surgery that Hayden was diagnosed with 22q11 deletion syndrome after the doctors did a specific blood test based on their suspicions that there was an underlying reason for his complications.
We eventually emerged from the curtain of tears, frustration and terror, and watched with pride as Hayden began taking full advantage of the opportunity to grow and thrive. He began crawling, then walking and eventually, even talking. And we loved every minute of it.
More recently...
Hayden has had to have further surgery on his heart. This happened on 15 August 2015, and I can honestly say that I didn't hear the guy complain or cry once throughout the whole thing. Humbling to say the least.
Following this most recent surgery, he has been diagnosed with moderate scoliosis which is currently being monitored and for which he wears a brace.
We don't know what the future will hold, but what I do know today is that he is my best friend, my hero and my inspiration. I also know that we would not have been able to get where we are without the miraculous wonders of the NHS and the amazing men and women working within the system.
We also wouldn't be where we are today without dedicated charities like Max Appeal who provide information, research, support and a chance to connect with other families in similar situations.
So, by doing this challenge I hope to raise some money for these charities, but most of all, I hope to raise awareness of this condition to ensure that these kids and young adults get the support, love and care they require to be able to thrive in their schools and communities, allowing them to live happy and fulfilled lives.
This challenge is for all of them!
Thank you all for your support, and if I see Nessy, I'll try and get a clear HD picture of her!
Organizer
Darren Botes
Organizer
England
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