Raising For Rohan

Fundraising campaign by Emma Flynn
  • £4,018.75
    Donated So Far
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 On the 27th March 2012 our 6 year old son Rohan was diagnosed with Infantile Facioscapulohumeral Dystrophy (FSHD) - a rare yet severe Muscle Wasting Disease, which currently has no cure, aswell as the muscle wastage, the condition can also affect hearing and sight, Rohan is already showing signs of hearing loss.

In the future the need for ventilation is also a reality due to the weakness in the muscles of the chest. Rohan also struggles with speech due the muscle weakness in his face, so can be very difficult to understand and his face is expressionless. Rohan has deteriorated rapidly over the last 2 years, with the calf muscle in his right leg almost completely gone and he is becoming increasingly weak on his right handside, making walking almost impossible, he falls regularly and cannot keep up with his 2 brothers and his friends. 

Rohan has a wheelchair now, and we expect that he will be confined to his chair in the next 1-2 years.


Despite al ofl this and the daily battles that Rohan has to face, he is the bravest, funniest, kindest little boy that you could ever hope to meet, he never complains and never asks "why me?" He is a true inspiration!!

Our dream as a family was to take our boy on a holiday of a lifetime to Disneyworld, Florida as he is a HUGE Disney fan, however we wanted to get him there before he is confined to his wheelchair. so hence our fundraising mission began!
Well with the help of many different people and organisations, many of which we dont know or have ever met, we managed to make Rohan's Disney dream come true and we spent a magical 3 weeks in Florida in April of this year, making a million different special memories that will stay with us all forever.

Now that we have done the "selfish" fundraising we want to raise money to fund research into finding a cure for this viscious disease. It would appear from our research that alot of the money raised by Muscular Dystrophy charities is going to research the more "common" dystrophies Ie: Duchenne and Becker. So as we see it, we have to take the bull by the horns and find the money ourselves, it may well be too late for Rohan, but if we can help another family in the future, then this is time and effort well spent and as the saying goes never say never....

If you feel that you are able to help please click on the green Donate button on the right of the screen.                         

Thank you for taking the time toread this page.

Love
The Flynn Family xxxx

Organizer

Donors

  • Rob Cull
  • Donated on Mar 02, 2014
  • Have a wonderful time :-)

£50.00
  • Rod & Karen Atkinson
  • Donated on Jan 09, 2014
  • Dear Rohan Karen and I have been following you and your family on FaceBook and have been sharing your posts. You are a very special little man who deserves so very much. You will get to Disney World and you will have a wonderful time there. We send you our Love and Best wishes Rod And Karen

£5.00
  • Ruth and Stu Dunphy
  • Donated on Sep 17, 2013
  • Well done to Ste and Juillet for their recent sponsored walk in support of this campaign!!!

£20.00

No updates for this campaign just yet

Donors & Comments

157 donors
  • Rob Cull
  • Donated on Mar 02, 2014
  • Have a wonderful time :-)

£50.00
  • Rod & Karen Atkinson
  • Donated on Jan 09, 2014
  • Dear Rohan Karen and I have been following you and your family on FaceBook and have been sharing your posts. You are a very special little man who deserves so very much. You will get to Disney World and you will have a wonderful time there. We send you our Love and Best wishes Rod And Karen

£5.00
  • Ruth and Stu Dunphy
  • Donated on Sep 17, 2013
  • Well done to Ste and Juillet for their recent sponsored walk in support of this campaign!!!

£20.00
  • Emma Flynn
  • Posted On Sep 11, 2013
  • Well after the fabulous day on Saturday at the Brownhill Arms, we have calculated that once all outstanding pledges have been received, we will have reached our Disney target, yes Rohan is going to Disney!! We just cant believe how quickly this has all happened, we are shocked and in awe of all you wonderfully generous people, many of which don't know or have never met Rohan, you are all truly inspirational, and words cannot express our level of our gratitude. Our fundraising is going to continue well into the future, Rohan will need an electric wheelchair at some point in the future and I believe that they come at a huge cost, approx 8000!! Plus we would like to raise money to give to the FSHD Society to carry out research and hopefully one day find a cure for this awful disease, it may be too late for Rohan, but if we can help prevent this from happening to other children in the future then that is reason enough to keep on going!! Once again, thank you so much to everybody for your continued support and generosity, we really couldn't have done this without you and we will be eternally grateful!! Lots of love, The Flynn Family x x x

  • Pat & Nicky Moss
  • Donated on Sep 10, 2013
  • Well done Ste & Ju on your sponsored walk.

Amount Hidden
  • ellen and roy ashcroft
  • Donated on Sep 09, 2013
  • good luck rohan hope you enjoy disney land x

Amount Hidden
  • Jennifer Fox
  • Donated on Sep 09, 2013
£10.00
  • Ali Cain
  • Donated on Sep 08, 2013
£10.00
  • Nicky
  • Donated on Sep 08, 2013
Amount Hidden
  • Terr & Marie
  • Donated on Sep 08, 2013
  • Sponsorship for Juliet & Steve's pub crawl!! well done. Terry & Marie

£25.00
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