Ben Privett

Ben Privett

Four events, four months misdiagnosed


Total raised so far£0.00

Total plus Gift Aid: £0.00


Raised offline: £0.00

My story

[p]Hi Everyone, [/p][p]Thank you for taking time out to read through my fundraising page. [/p][p]The charity I'm raising money for is The Dancing Eye Syndrome Support Trust. The aim of the charity is to provide support and information to families of children with Opsoclonus Myoclonus. This charity is immensely close to my heart as my son was diagnosed at four months old with this incredibly rare condition, one in ten million to be precise. [/p][p]What is Opsoclonus Myoclonus (OMS)?[/p][p]OMS is an autoimmune disease suspected to occur when the immune system tries to battle a cancer and gets confused, attacking the brain instead. [/p][p]Symptoms include: [/p][p]Rapid multi-directional eye movements (opsoclonus) [/p][p]Involuntary muscle jerks (myoclonus)[/p][p]Uncoordinated movement (ataxia) [/p][p]Irritability [/p][p]Sleep disturbance [/p][p]The onset of OMS is usually abrupt and often severe. OMS typically occurs in association with tumours (neuroblastoma), or following a viral or bacterial infection. The recommended treatment consists of a combination of chemotherapy, steroids & IVIG, alongside specialist therapies and support. [/p][p][br][/p][p][b]Our Story[/b][/p][p]On May 26th 2016 our beautiful little boy Rudi was born. After two nights in hospital we thought we would be able to travel home and begin our family life. Unfortunately this wasn't the case as a nurse noticed Rudi's body movements were very twitchy (almost like he was having small seizures)[/p][p]After several discussions with the doctors/nurses they decided to place Rudi in an neonatal unit to carry out further tests; EEG, MRI, CT Scan, Lumbar Puncture and an Ultra Sound which were all difficult to watch. [/p][p]After an agonising number of days at Worthing Hospital we were discharged with the assumption Rudi was having seizures. After four months of weekly visits to London & Worthing hospitals and continual discussion with specialists we heard the words Opsoclonus Myoclonus. Naturally we were overwhelmed with emotions and had an abundance of questions to ask. We couldn't even pronounce the condition![/p][p]Fast forward two years, Rudi is now being treated at the Royal Devon & Exeter Hospital with quarterly visits to the see the neurologist at St Thomas & Guy Hospital, London and weekly therapies. We are treating each day as it comes and every mile stone means the world to us. [/p][p][br][/p][p][b]Challenge to Raise Money [/b][/p][p]The Dancing Eye Syndrome Support Trust is very close to our hearts and helped us when we were feeling isolated and coming to terms with the diagnosis. The trust relies solely on sponsored money to help towards medical research and a very important annual weekend away, where the affected families can meet each other, share their individual stories and feel that they are not on their own. [/p][p]My challenge is to compete in four events this year to represent the four months Rudi was misdiagnosed. [/p][p][br][/p][p]Exeter Half Marathon - 9th February 2019[/p][p]Lulworth Cove Trail Run - Half Marathon - 23rd March 2019[/p][p]South West Coast Path Challenge - Half Marathon - 6th April[/p][p]The Big One - The London Marathon - 28th April 2019[/p][p][br][/p][p]Any donation big or small would be greatly appreciated and help spur me on through these challenges.[/p][p]Ben x[/p][p][br][/p]
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Aug 23, 2019


Hereโ€™s my donation which I forgot to do, thank you for a lush wedding day I love all three of you xx


Jul 25, 2019

Booth family

Well done Ben From Sylvia & Brian Booth


Jul 13, 2019



plus £0.75 Gift Aid

Jun 5, 2019


From the staff and residents of Oldway heights. Well done Ben awesome achievement!!!


Jun 5, 2019


Well done Ben From Little Oldway x


plus £12.50 Gift Aid

May 29, 2019


Petey, youโ€™re beautiful with or without hair ๐Ÿ˜๐Ÿ˜˜๐Ÿ˜๐Ÿ˜˜


plus £2.50 Gift Aid

May 27, 2019

Megan and Dan

For Peterโ€™s shave and Rudi xx


plus £2.50 Gift Aid

May 25, 2019


Peter, You looked so beautiful bald ๐Ÿ˜ and you have made me a very proud ****T.


plus £2.50 Gift Aid

May 23, 2019

Juliana, Seb, Luca and Bella

WOW Ben great achievement well done! we're very proud of you all! xx


plus £22.50 Gift Aid

May 21, 2019


As promised if you beat my time. Well done Ben respect. From a very proud father/grandfather


plus £25.00 Gift Aid

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