On the evening of 21 September Rachel and her 2 daughters Charlotte and Lizzie will be taking part in the Fight For Sight Carrots Nightwalk in London.

The Fight For Sight Carrots Nightwalk is a sponsored, organised night walk around London seeing the sights of London at night time but also raising awareness and hopefully funds for the Fight for Sight.

The reason that Rachel, Charlotte and Lizzie are doing this walk is that our youngest daughter Lizzie was diagnosed with a rare eye condition called Keratoconus, 3 years ago at the age of 8.  

 

Keratoconus is a degenerative disease of the cornea. It causes the cornea to gradually thin and change in shape so that it protrudes from the eye in a cone-like shape. This then impacts on the ability of the cornea to help focus light on the macula and vision can become blurred and distorted. It usually affects both eyes. It can be inherited. And eventually corneal transplant is very often the only viable alternative if progression continues especially when the disease first presents at a young age. 

 

In practice that means that Lizzie’s eyes are getting worse and that will continue. At the moment with her “bad” eye she can’t see any letters on a standard eye chart and can jut count fingers. With a hard contact lens (still quite painful) she can at least see a couple of lines on the eye chart. But her bad eye is still getting worse.

 

In her “good” eye which is also getting worse, she had recently undergone a procedure which may help slow down or hopefully stop the progression of the disorder so she may at least get a few more years of sight without too much of a problem, but again, it is not guaranteed to stay like that. The procedure not approved by NICE for use in the NHS on children as young as Lizzie so has had to be paid for privately.  

 

There is still much to learn about Keratoconus and as you can see, for the reasons above, especially as Lizzie is still only 11 years old, it’s something that is very close to our hearts.

The full details of the walk can be found at

http://www.fightforsight.org.uk/carrots-charity-nightwalk-london. There are 2 nightwalks. The 15 mile Nightwalk starts at 11.00pm, and the shorter 6 mile Nightwalk starts at 7pm for those less able or too young to enter for the 15 mile walk. Both walks start and finish BFI IMAX on the South Bank. 

The Fight for Sight charity fund research that is deepening the understanding of eye diseases, and helps their early diagnosis, prevention and treatment. The funding has helped to save the sight of premature babies, enabled over 52,000 corneal transplants, and support the world’s first gene therapy clinical trial for inherited retinal disease.

  

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