Izzy's Tri for Dancing Eyes

We are fundraising for:

We will split the funds that we raise equally between the two.

Most importantly, we are raising awareness of rare autoimmune diseases, especially Opsoclonus Myoclonus Ataxia (Dancing Eye Syndrome).

We've set up an Instagram account to blog/document all things Tri! Find us @Izzys Tri For Dancing Eyes

Our story:

On Feb 14th we heard the words "we won't let her go home like this" in Paediatric A&E and we almost cried with relief. Our daughter Isabelle had been turned away twice previously after doctors has told us "the symptoms are weird but we can't diagnose anything". She had lost her ability to walk, was getting full body tremors, vomiting, sleep disturbances and really crazy eye movements that we now know to be opsoclonus.

Fast forward a blurry few weeks in the LGI and we finally had a diagnosis, Opsoclonus Myoclonus (OMS) or Dancing Eye Syndrome. OMS is a rare neurological condition which develops during infancy. It's an autoimmune disease which attacks the cerebellum (the part of the brain that deals with co-ordination), and it can be caused by a neuroblastoma (tumor) or an infection. It's so rare that many doctors don't know about it and we were so super lucky that Dr Taylor and his team had come across cases like this before and knew leading researchers in the field.

What does the future hold?

"The outlook for children and young people with opsoclonus myoclonus syndrome is variable depending on the severity of the symptoms when the condition is diagnosed. The majority of children will have a chronic relapsing disease and will require long-term immunosuppressive treatment.

Relapses may be triggered either as the treatment is withdrawn or following a viral infection. Many children will experience ongoing problems with learning, coordination, behaviour and sleep."

Great Ormond Street Hospital, (2024).

For anyone wanting to read more about OMS/ Dancing Eye Syndrome these are two great resources:

1. The GOSH hospital summary:

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/opsoclonus-myoclonus-syndrome-dancing-eye-syndrome-omsdes/

2. The scientific paper guiding much of Izzy's treatment:

Rossor, T. (2022). "Diagnosis and Management of Opsoclous-Myoclonus-Ataxia Syndrome in Children". Neurology Neuroimmunology & Neuroinflammation. e1153, 9 (3). doi:10.1212/NXI.0000000000001153 https://www.neurology.org/doi/pdf/10.1212/NXI.0000000000001153

What are we doing?

We are doing a sponsored triathlon across three dates in summer. If you are free please please come and join us or cheer us on. You can come to one event or all of them!

SWIM - 23rd June - Wyresdale Park Swim - £5 entry. Do as many laps as you’d like. Lifeguarded by Annie Kendrick of Attitude Swim

BIKE - 20th July - Leeds Town Hall to Bingley Five Locks (& back if you feel like it!) - Ride along the canal. 16 miles each way. Likely stop off points inc. Saltaire Brewery and picnic at the 5 locks.

WALK - 17th August - Yorkshire 3 Peaks - There will be a group doing all 3 in one go. There will be another group just doing Pen-y-ghent!

All abilities and fitness’ welcome. It’s not a race. We’re having a laugh and doing some sport for charity. Come and join us!!

Why?

First and foremost we want to raise awareness of

Dancing Eye Syndrome!

Secondly we want to raise money for the Dancing Eye Syndrome Support Trust who provide incredible support and respite for families who are living with OMS and fund further research into the disease.

We also want to raise money for the Leeds Hospitals Charity. We are eternally grateful to everyone looked after (and is still looking after) us at the LGI, from the paediatric neuro specialists to the nurses, play teams to domestics on L38. They're all angels.

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Sign up to join us here:

https://forms.gle/Bqz8BXzn5AsXQXXC6