Cure Aniridia

Shine the light on Aniridia

 

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Ella's Story

Shine the light on Aniridia
Jul 31, 2010
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Ella had her left eye patched for 6 months when she was about 18 months old. This was under guidance from Great Ormond Street as she has a cataract in her left eye and a corneal scar. Thus it is the weaker eye of the two.

She wasn't a great fan of the eye patch and most children aren't but with perserverance, she wore it daily for several hours and thankfully her sight has not been affected by a squint.

 


Jul 31, 2010
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Yes I am finally getting there...abandoned the cleaning, shut the door on life and aim to write a few helpful hints.

So we found toys that were useful to Ella were those with lights and music. A particularly good brand which she loved was 'Bruin' which can be bought in Toys R Us. They are very brightly coloured and have a good range of musical melodies and ineraction for children. She still now plays with a keyboard we got and a baby walker that has a shape sorter on the front.

Ella also loved anything that she could hold to her ear - little phoens that had melodies, and a particular favourite was the 'Mypod' by Chad Valley which unfortunately is no longer made. We have one left on it's last legs but I think next it will be an MP3 player!


Jul 31, 2010
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Ben and Adam made it!!!! In 21 hours and 52 minutes....hopefully I have that right! So huge thank you to both of them, sore legs and feet and knees, but a mammoth challenge achieved and so many funds raised! Thank you!!!


Jul 19, 2010
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This Wednesday Ben Richardson and his friend Adam, supported by Virginia (Ben's wife) intend to climb 24 peaks in the Lake District, each over 2,400ft, in 24 hours. The challenge consists of 31 miles of walking, as the crow flies, coupled with approximately 14,000 feet of climbing in rugged terrain. This is usually done in teams of 5 over 2 days. However, they shall be undertaking to complete the challenge in a team of two in one 24 hour block. This means they shall have the extra challenge of carrying everything that they need, having no sleep and navigating at night. 

An amazing selfless act of bravery and determination to support the campaign! Huge thanks to them and also for the Active Nation Open Day held last Saturday 17th July which also raised funds and to everyone involved for their kindness!


Jul 07, 2010
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Kirsten Ferguson and Fiona Bell both climbed Ben Nevis for the campaign and the girls have not been deterred by that huge feat! They are now running Glasgow half marathon in aid of Shine the Light on Aniridia, for which we are truly touched and amazed at their kindness. Pictures to follow! Read about their goal at http://www.justgiving.com/Kirsten-and-Fiona


Jul 07, 2010
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Ella's Uncle and Godfather Ben Richardson is taking on an inordinate challenge this summer to climb 24 peaks in the Lake District, each over 2,400ft, in 24 hours. The challenge consists of 31 miles of walking, as the crow flies, coupled with approximately 14,000 feet of climbing in rugged terrain. This is usually done in teams of 5 over 2 days. However, he shall be undertaking to complete the challenge in a team of two in one 24 hour block. This means he shall have the extra challenge of carrying everything that he needs, having no sleep and navigating at night. Just mind blowing and yet another amazing challenge to raise our target. Thank you to Ben, his co team member and Virgina, his wife, for helping organise this and supporting the campaign.


Jul 02, 2010
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Well seems like this will take forever me getting info up here but hopefully you will bear with me!

Ella had to have an NPA after we discovered problems with her breathing at an early age. We weren't happy that there was a possibility of a tracheostomy, so we sought a second opinion at Great Ormond Street via Michelle Wyatt, Consultant in Otalaryngology. She suggested an adenoidectomy which she performed and as standard at GOSH children have an NPA inserted post surgery to aid breathing. For the first time in a year Ella slept soundly that night after surgery - no snoring, straining to breath or loud noise. We had to keep watch in turns as we were convinced she wasn't breathing at all! The next day they removed this NPA and then the following night she slept without it - back to the noise. We were devastated. We thought we had put her through unnecessary surgery. Miss Wyatt explained that the best plan would be for us to be taught how to make up this NPA and use it on an ongoing basis until Ella's whole ENT area had had chance to develop and strengthen.

So we took her advice, were taught how to make this device up which was no mean feat. Cutting a tube to the required length, sewing it with suture to a holder and then affixing straps to attach to her baby face, it took a lot to think we could do this. Then we had to be taught how to insert the 9cm 'prong' down her nostril and learn how to use a usction machine to clear it, which ahd to come everywhere with us. Ella was wonderful to say in the least, she let us go about this and managed to cope with the 'prong' daily and still beam away.


Jun 23, 2010
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I fully intend to write our story and hope it helps you out if you need pointers on where to go, if you have a poorly child or know someone who does - right now I could do with a tape recorder and someone to write it all down for me (any takers?!), that's the joys of 2 children, your own business and home to run.

So I will post the treatment Ella has been through, what we have found helps and all other relevant useful information for you.

Just bear with me a little longer!


Jun 23, 2010
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One of the hardest things to comprehend with a child with visual impairment if you yourself can see perfectly, is what toys will they like or need!

We would suggest you contact Aniridia Network UK as they are specialists in this field and have lots of resources available and answer all questions!


Jun 22, 2010
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Big thanks go to Julia Wilson and Jane MacHugh for completing the Alnwick Triathalon in aid of our campaign....Months of training in the saddle and the pool culminated in them all completing a huge effort and raising money which is still being counted and coming in....more later!


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