Hi my name is Vicki, and my little girl suffers with HME also known as MHE.

It took many years of fighting for my daughter Shania, to get someone to listen to my worries and fears about my concerns for her well being and the simple fact something was wrong with my little girl. She cried all the time, and nothing i could do would help her.She also slept so much, that fear and upset were really taking over my feelings, but i kept pushing Dr's and although i felt like i was never being listened to i refused to give up.

In June 2010 my world seemed to be falling apart, before my eyes during a routine dental appointment.... i rubbed my little girls leg as she was nervous of laying down to have her teeth looked at, and it was at this point i felt my throat close with the hard mass that i found near her knee. I knew then that something was very wrong and i whisked her to the G.P where i refused to be fobbed off..the G.P agreed this was not normal and she was sent for an x-ray there and then.I cant explain what was going through my head that evening, but to say i was petrified would have been an understatement! I was told i would be contacted with the results within a week or so, and thinking of having to wait that long was torture, but i had to carry on as us parents have to huh...BUT less than 19 hrs later while sitting in the garden with my little girl Shania, i received a call....They had found something and my little girl would be referred to a consultant...my heart dropped...It was a further two weeks before i found out exactly what was going on and what was wrong with her.... "MULTIPLE HEREDITARY EXOSTOSES" 

The consultant was gobsmacked and kept looking at Shanias x-ray and said " wow this is rare" but i was totally lost..He gave me a piece of paper, with what she had written on it...and we were send on our way.....So now with a name of what she had and feeling very lost and tearful, what was i meant to do then? FIGHT! Fight to get my little girl pain meds and to help her in any way possible to make her comfortable.Its been such a challenge the last 18 months BUT i wont stop fighting for her EVER! And im determined to raise as much money as i can to help my beautiful little girl and others out there who have been struck down by this incurable awful condition.

Below is a link to Shanias utube video (with a personal msg from her at the end..oh and her little brother commenting here and there lol) Making videos and letting her express herself has helped her so much and with all the operations that are going to happen now she really needs support and to also do something positive..hence this fundraising page :O)

http://www.youtube.com/watch?v=Xe2a5Q7-OUk

Thank you to all who have visited

<3