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.
The Flynn Family xxxx