Feb 2013


Hello to everyone,

And a happy 2013 to all of you, we hope that you have a lot of nice things to look forward to this year.

Well our 2013 started with some brilliant news, my big sister Libby has finally got the results of her genetic tests and we are elated to know that she will not develop BVVL like me, this is a massive relief for my family and I.

I continue to be stable since I began the Riboflavin treatment, and since the Ubiquinone has been added in we have even seen some improvements to my concentration, hand movements and leg strength. Mummy and Daddy are quite simply the most relieved and proud parents anywhere and they are eternally grateful to everyone involved in my well being, to friends and family for support and to everyone who has raised funds, offered a kind word or said a prayer.

The cold snowy weather of recent has been hard work, but I have still managed to continue with my Hippo-therapy to strengthen my core muscles. I have also this month receive my new sleep splints to try and correct the curling tendons in my arms which are causing problems with straightening my fingers. Because of this problem a further adjustment has been made to my electric wheelchair to help me feel more comfortable whilst steering it.

I also received a rather fluffy therapy in the shape of fat squidgy Holly the guinea pig, who I am  very enamoured with. It is very calming to sit and stroke her lovely black coat and feed Holly her favourite treat of parsley.

I am looking forward to the warmer weather, so I can get out more...I wish I could go sledging and skiing like the other girls and boys, but sadly the access is too restrictive for me. Still we have made some great snowmen (and ladies) in the garden and had a lot of snowy fun in our own back yard!

I am continuing my inoculation programme and so far I have encountered no side effects which is great news. It now means I am on my way to being protected from other diseases which could do me harm.

Fingers crossed this year will continue to be positive, Mum & Dad are keeping everything crossed and would ask you to do the same.

Thank you again for your amazing generosity of spirit and the kindness which is continually shown to me and my family....you amaze us.

Much love

Ava xxx





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