How to get the best out of this blog...

All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x

Thursday, 30 December 2010

Thursday 30th December

Wow, I’ve been making money while I sleep – so that’s what it’s like to be famous!
Mummy only told people about my fundraising page and let it go live at 11pm last night.
Seriously though Thank You so much for those of you who have started to donate, the ball is, a Mummy says, starting to roll!

A special mention to Claire Coombs who has been sweating it up in the Gym today (So I'm informed, but if not Hulla Hooping on the Wii is perfectly acceptable as an alternative in Mummy's book ;-) ) in order to prepare for Nantwich Triathlon – she loves cakes and hates exercise as much as Mummy does and is offering to donate her sponsorship money for my cause – that is so amazing Claire. Keep up the Good work - Daddy will be running after you soon enough.

As I have been a good girl I got to come out of my box, I had a smashing splashy bubbly bath and then got my nose pipes back on and then got dressed in my designer surfy wear from Uncle John and Aunty Sam, thanks dudes.
I was hoping to look glam for my Chronicle picture but as the lady is poorly sick, I didn’t get to tell them about my fundraising or show off my wardrobe. As Daddy likes moving things round and tidying my bed has been repositioned and I have a different view today, I now have my Humphry mobile from home to watch as I like things that move now as well as lights.

I had a visit from Helen who came laden with moulding kits, seemingly Llandudno is where to go for plaster casts kits. (Poppy? A trip to the Great Orme perhaps?)  She said she didn’t want Mummy to get upset if she made another boo boo so she bought two! So nice of her, kisses Hels. Xx
Mummy asked for some feathers to tickle me with today so she and Helen could stroke my face, hands and feet…it was lovely…I could have smiled…if only for these face stickies!!

After Helen went, an old school friend of Mummy’s came to see me, Sharon, she is a very good runner, she said wants to run to raise money for me if she can – she just needs an event to run now if anyone knows of any good runs coming up please let us know. I was pretty good while she was here and then she mentioned she had to leave, I threw what is commonly known as a wobbly, not a tantrum, (I’m too young for that) but my heart rate starting jiggling up and down and I think it scared her a bit so she had to rush off…sorry about that, I think this is why Mummy likes to warn visitors I can be very naughty without warning.
By the way - I am now officially a tweeter, FOLLOW on LittleMsEllie, I want to spread the word and get some famous people to follow me and help support my cause. Imagine if I could have a whole ward dedicated to me, never mind a room. Mummy says I can aim for the stars if I want to, because I deserve to be with them.


  1. Now, I said I like running, but can't claim to be a good runner!!! But seriously, if anyone knows of any runs (half marathon maybe) - I'd be only too happy to run it for your cause Ellie!

    It was wonderful to meet you today and I'm hoping to see you again very soon xxxx

  2. Hi Ellie, it has been lovely reading about your life! i have a little boy Khian who is 3 years old his is also on the Zellweger spectrum in the middle. We live near Oxford and i also have another little boy Marlei (pronounced the same as you little doggie) if you or you mummy would like to talk i am on facebook Zilah Grant

  3. Hi Ellie-
    I love reading all about you. It sounds like your parents are taking great care of you. You're in our thoughts and prayers.
    Love your friend,
    Ginny Gamble (and her parents Brant and Mel)
    Tulsa, Ok, USA