Weʼve raised £1,267 to raise funds for Hope 4 Huné by Sean Kelly completing the Fort William Marathon on 29th July 2018
- Stoke-on-Trent, UK
- Funded on Monday, 24th September 2018
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Facebook tells me that I have 891 friends, and that's as good a number as any to make as my target! Eight Hundred and Ninety One POUNDS to be more specific. What's the target for, well.. I'm running the Fort William Marathon in the Highlands of Scotland on July 29th, 26 miles. I'm told as a first Marathon, it is not very forgiving.. although, if you know my ex, I should be right at home 😊.
So why am I doing it? Let me tell you! I have two awesome friends called Benj Gascoigne & Zeedee Jazz Sawyer-Hartley ..they are on a path, a path I can only fathom the difficulty, but anyone that knows these guys knows what amazing character they’re showing in adversity ..which brings me onto someone who is even more awesome.. their beautiful baby daughter, Huné. Huné has a disease called SMA (spinal muscular atrophy) ..in laymans terms, it is a disease that steals away physical strength by affecting the motor nerve cells in the spinal cord.. taking away the ability to walk, eat, or even breathe. It is the number one genetic cause of death for infants.. although from what Ben and Zeed are expressing to me, they’ve got a warrior on their hands whome wears a smile throughout. The money that we can potentially raise will go towards apparatus and essentials and importantly to aid their goal, for Huné to sit up unassisted and run a few psychological marathons of her own.
There are more details about Huné’s condition further below, and if like me, you’re compelled to invest in this story then please investigate. So yeah, I know it’s a bit optimistic, but, the number I have given myself to raise is £891. In my child like mind, if every person I am acquainted with on Facebook can pledge just 1 pound it will help towards the target, then we can make Huné that little bit more comfortable and put more spotlight on SMA.. in return, I PROMISE you Blood Sweat and Tears.. and prob a bit of Vom! It's all for nothing though without YOUR help, so If any of this resonates with you, please donate.
The Marathon is 9 weeks away, so if you could kindly share the hell out of this to cast the net further, preferably on Fridays when people are paid.. I'm joking (seriously joking).. I would be eternally grateful. I’ve never been one for linear writing so I appreciate if you've read all this, and in advance, from Ben, Zeedee & myself, thank you.. but most importantly, a big gummy thank you smile from the happy soul you see below, Huné. Please help us reach our goal. Big love, always!
Sean Kelly will be putting his body on the line by competing in the Fort William Marathon, Scotland. A grueling marathon for the seasoned competitor - this will be Sean's first competitive marathon. A challenging multi-terrain route taking in the spectacular sites of Fort William, including Ben Nevis, Thomas Telford's Caledonian Canal and Neptune's Staircase, The Commado Memorial, General Wade's High Bridge and the old railway viaduct.
This is sure to be one tough challenge and we ask to support Sean, you donate whatever you can spare to the Hope 4 Huné. To check more out about the Fort Williams Marathon click the link.
Huné-Deandra Gascoigne was diagnosed with Spinal Muscular Atrophy Type 1 at just 8 months old. This terrible disease is the number 1 genetic killer of infants and Huné was given just 10 months to live.
She is now 18 months old, she is not just surviving, she is thriving. Soon after her diagnosis she was excepted on to programme provided by an American drugs company for pioneering treatment. The treatment, Spinraza, is not only stabilising Huné’s terrible condition, but is helping her to gain some strength - her parents hope that one day soon she may be able to sit unassisted. Huné will continue to receive the treatment for the rest of her life via a lumbar puncture every 4 months.
The treatment, although not a cure, has given her parents hope. To ensure Huné gets the treatments full effects, she undergo’s extensive physiotherapy, physically and respiratory wise, she has a saturation monitor at night to monitor her oxygen levels and heart rate, a suctioning machine to help keep her airways clear and her parents are in the process of getting a cough assist as she has an extremely weak cough due to weak muscles. She has specialist chairs to sit in, a stander to help with postural management and breathing, a wheelchair pram etc, a sleep system and she is in the process of getting braces and splints.
With the generosity of many people her parents have been able to fund numerous things to make Huné’s life that little bit better. Things like her adaptive carseat, her Wizzybug (a specially designed toddler powered wheelchair) accessibility equipment and more.
As the treatment continues Huné’s needs will develop and further equipment will be needed, to give you an idea a rain cover for a wheelchair pram costs about £300. As Huné gets bigger her need for more physiotherapy means her parents will need to go private, has her spine develops she will benefit from Chiropractic sessions to help slow down scoliosis. All of the money raised will be put towards making a little girl a little bit stronger.
To check her story out and to follow her continued fight check her out; Hope 4 Huné
Thank you so so much.
“Though she be but little, she is fierce”
Updates appear here
Benj Gascoigne started crowdfunding
Leave a message of support
Aug 30, 2018
Aug 11, 2018
Aug 10, 2018
On behalf of, Debbie @ The Elms, Burton on Trent. THANK YOU!!
Aug 10, 2018
£20 on behalf of The Park In Dresden
Aug 10, 2018
Well in Sean! X
Aug 9, 2018
Aug 1, 2018
Well done Sean .
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