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Sarah Mills avatar
Sarah Mills

Darling Diddy D

Running my 1st Marathon, for Nystagmus awareness for Nystagmus Network because our daughter Delilah has Congenital Nystagmus

230 %
£2,305.62
raised of £1,000 target
by 97 supporters
Donate
  • Event: Virgin London Marathon 2017, 23 Apr 2017

Nystagmus Network

We provide information & fund research to help people affected by nystagmus.

Charity Registration No. 803440

Story

Thanks for taking the time to visit my JustGiving page.

The Nystagmus Network is the oldest charity in the UK,a. providing support and information about the eye condition nystagmus. The charity provides a support network to families and leading the way in funding the research to find effective treatments. The Nystagmus Network is widely accepted as the leading source for all information relating to nystagmus.

When Delilah was six months old she was diagnosed with Congenital Nystagmus. Nystagmus means (very simply terms) the continuous uncontrolled movement of the eyes, in Delilah’s case side to side, resulting in reduced vision. Vision problems resulting from congenital nystagmus does tend to improve until around the age of five or six and doesn’t usually get worse. There is no cure for Nystagmus.
The past eighteen months have been tough, educational and very emotional, but Delilah’s now under the brilliant care of Manchester eye hospital and has a great visual support worker.
We are still very much on the start of our Nystagmus journey and it will only be apparent as she grows what the extent of her reduced vision will be. One thing that is fact that NOTHING holds our Diddy back. She is the most confident, courageous outgoing two year old you could meet. She’s ahead of her milestones for her age and apart from her glasses you would never know her vision is effected.
Running the London Marathon will be a huge personal and emotional challenge for me and I hope you can support me by helping me raise money for this charity. Nystagmus Network has been invaluable to our family amazing. The money raised will help the ongoing support, raise awareness and help continue research into help finding better diagnostic methods, therapies and, potentially, prevention or cure.
I have tried to keep my story brief and to the point, to explain and lay out our personal situation for all to read is so so hard to do, so hard.

Please free to message me if you want more info. Thanks guys xxx

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