Cure Aniridia

Sorry we have been out of touch for so long! Lots has been happening in the campaign and Ella's daily life!

So a quick update for you, she had raised eye pressure in her right eye in January 2011 so we had to go back to Great Ormond Street and see the fabulous Mr Nischal. He checked her eyes under anaesthetic (EUA) and said prior to this that if she needed a 'goniotomy' to relieve the pressure in the right eye, he would go ahead and do this at the same time.

Sure enough she did require the goniontomy and is now only the third aniridic that he has ever performed this operation on. This is owing to the controversy surrounding such a procedure on an eye where there is no iris present - which stabilises the eye. However, we knew we were in the best hands possible and that procedure versus having shunts fitted in Ella's eyes was much more preferable.

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.

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.

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!