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Benjamin Stanford raised £23,360 from 479 supporters

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Closed 31/07/2021

116%
£23,360
raised of £20,000 target by 479 supporters

    Weʼve raised £23,360 to Fletcher's Future

    Bromsgrove Worcestershire
    Funded on Saturday, 31st July 2021

    Don't have time to donate right now?

    Story

    We are parents to a little boy called Fletcher. When Fletcher was born he was so with high hopes and expectations however to reach such aspirations has since been asked to conquer a rare neuromuscular condition called Spinal Muscular Atrophy (SMA). By doing this challenge we hope to raise funds to provide Fletcher with all the support and opportunities to live a long and fulfilling life.

    On the 13th October 2020 aged 13 months Fletcher was diagnosed with SMA. SMA affects the lower motor neurons found in the spinal cord. For these nerve cells to remain healthy our specialised genes must produce enough SMN protein. Due to a faulty SMN1 gene Fletcher is unable to produce enough of the SMN protein needed. This means his nerve cells have started to deteriorate restricting the delivery of signals from the brain to his muscles making movement difficult causing progressive muscle weakness and loss of movement. This will affect his crawling and walking ability, arm, hand, head and neck movement, breathing and swallowing.

    At 15 months old Fletcher is as eager and excited as the next to be an ambulatory mischievous young boy. With the help of our family, friends and the communities around us we hope to provide every possible opportunity of an amazing quality of life. All money raised will go towards equipment, treatments, physiotherapy and home modifications. He is a shining light that brings joy to us all. We are eternally grateful for any donation that will support him on his journey.

    From Sunday 25th July myself (Dad), Fletchers uncle and cousin will by cycling from John O’ Groats to Lands’ end a total of 910 miles. We are however adding one element which is completing this challenge in just 7 days. This will require us to cycle 130 miles (on average) a day.

    We may not be fully aware of all the challenges that lie ahead neither fully understand the preparation that is required nevertheless training has begun and are determined to ensure nothing will stand in the way of providing Fletcher with the quality of life any young child deserves.

    As of july 2019 the NHS began using a drug called Nusinersen/Spinraza the first (and currently, the only in the UK) available drug treatment for SMA. This drug attempts to increases the SMN protein providing Fletcher with more of the protein his motor neurons need to give his muscle a chance of moving. There is a new pioneering much more advanced treatment called Zolgensma. Zolgensma is a gene therapy medicine for treating SMA but as it stands is currently only available in the USA and comes with a large price tag. We are hopeful and thankful that Nusinersen is available to us yet remain hopeful that one day it is possible that Fletcher receives all possible medicines available.

    Help us raise awareness of SMA, learn about some of the amazing charities that support rare diseases and for more information on SMA follow Fletchers journey as an SMA patient @Fletcher.LivingwithSMA

    Updates

    4

    • Benjamin Stanford5 months ago
      Benjamin Stanford

      Benjamin Stanford

      5 months ago

      Next Sunday, Day 1 of our journey takes us to Inverness, a distance of 145 miles. Day two will see us cycle to our final destination north of the border, Inverness to Perth 117 miles. 138 miles to Carlisle followed by 119 miles to manchester take us over the halfway mark. Manchester through Bromsgrove (keep an eye on Social media for exact details) and onwards to Gloucester 135 miles. Gloucestershire to Holsworphy completes our penultimate day, the longest yet 149 miles. Day 7, our final day and 98 miles to Lands End

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    • Benjamin Stanford5 months ago
      Benjamin Stanford

      Benjamin Stanford

      5 months ago
      Update from the Page owner

      We cannot believe that with 1 week before we are due to set off we are on 94%. Thank you everyone for your generosity and support over the last 6 months. Your donations/sponsorships will make a huge difference to Fletchers life. We also want to thank those family and friends that have/plan to complete challenges/fundraisers in order to provide additional funds to enable Fletcher to have the best possible opportunity of a normal life. As a family we are humbled by your generosity and kindness, during such difficult time for all, we thank you!

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    • Benjamin Stanford1 year ago
      Benjamin Stanford

      Benjamin Stanford

      1 year ago
      Update from the Page owner

      Smashing it thanks to all of you! 5 days in. 50% target achieved. 500 followers Everyone involved is helping us raise the awareness needed! The effort you have gone to is more than we could have asked!

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    1 year ago

    Benjamin Stanford started crowdfunding

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    Page last updated on: 7/31/2021 20.06

    Supporters

    479

    • Harry and Ellie

      Harry and Ellie

      Jul 31, 2021

      Unbelievable effort guys well done 👏🏼👏🏼👏🏼

      £20.00

    • Jack Mac

      Jack Mac

      Jul 31, 2021

      Well done lads, fantastic achievement, you’ve wasn’t yourself a fully deserved pint 🍺 🚴

      £30.00

    • Sharon and Michael Hampson

      Sharon and Michael Hampson

      Jul 31, 2021

      Thinking of you well done

      £50.00

    • Declan and Paige Hampson

      Declan and Paige Hampson

      Jul 31, 2021

      Fantastic achievement Ben! What you've done is truly inspiring. Hopefully we can catch up soon bud 👍🏻

      £50.00

    • George & Harper

      George & Harper

      Jul 31, 2021

      Well Done Ben Jack and Karl !!!! You did it

      £20.00

    • Hannah & James

      Hannah & James

      Jul 31, 2021

      What an achievement! Well done lads 👌🏼 X

      £25.00

    • Christine Evans

      Christine Evans

      Jul 31, 2021

      Great work guys!

      £10.00

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    About Crowdfunding
    About the fundraiser
    Benjamin Stanford

    Benjamin Stanford

    Bromsgrove Worcestershire

    Bike Ride

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