Ladies Camera Club

7 Feb 2008

leavin on a jet plane

Bids up to £25 on the Apron - you guys love LUCY (see post below to keep bidding on the apron).
Anyhoo......
Been a little spine chillin here today as we got our copy of the local press regarding Belle's crusade. It made front page news and the pictures of her make her look awful thin. It kind of put the whole thing into perspective and that we are right to get our little girl sorted. As a result there has been various agencies from magazines wanting to run a slot on the whole shebang which will not only raise the profile of belle's plight but also bring the fact that there are hundreds of children who go undiagnosed and ignored every single year. Syndromes without a name (SWAN) is probably something we will have to register with should the Nevada doctors come to the same conclusion as the NHS. Im not pinning my hopes (ok, I am but Im trying to be brave about it) but Im certain we wouldnt have been invited out there for no reason. I have faith and thats more than a lot of people who bang their heads against brick walls and begging for help; getting none. Oh how my heart is breaking at that thought.
We only agreed to a magazine interview so that the results of the event will ultimately benefit Ellie and her fundraising efforts (not us, I feel I must stress). We hope to reach out to other parents in a similar position and call to them and let them know they are not alone. Its so hard to convey just how hard it is to have professionals not offer forthcoming suggestions or pinpoint the problem. Grrrr, Im no good at this. Not at 1.10am in the morning.
So anyway, Ive been bopping around to this little number tonight and hope you all agree its a bloody good tune.



12 comments:

Brook said...

SWAN- I hate the term. I've been living with it for years and it is so terribly frustrating. I feel like if I just had a name at least I wouldn't feel so isolated and alone. Now my youngest is having some problems and he isn't fitting in any one group either. I'm praying for you and rooting for you also!

barb michelen said...

Hello I just entered before I have to leave to the airport, it's been very nice to meet you, if you want here is the site I told you about where I type some stuff and make good money (I work from home): here it is

Charlotte said...

Happy Birthday! Have a wonderful day, so thrilled with the progress on your fundraising for Ellie xxx

Debi said...

I just read about your sweet daughter on foxnews.com. She is a beautiful child & my heart aches as I see the struggle to find a reason for her lack of weight gain.

I do not know all the tests she has undergone, so forgive me if this has been asked before, but has she been tested for celiac(coelic) disease? One symptom in young children is lack of weight gain. They eat & eat but can't put on weight, often their hair falls out, they have diarrhea, stomach pains. But if it's something they've always had, they may not know it's not 'normal'. I just had to ask if this had been looked at as, my children and husband have this disease. There's no cure really, no operation or pill to take, but a treatment...a life long adherence to a gluten free lifestyle. Here is a link, if you've not looked into this.. http://www.coeliac.co.uk/

I will keep all of you in my prayers and I hope you find an answer soon.

American Fork said...

Oh my gosh, I just read about Ellie on Foxnew.com... she is famous! But, if you ask me, they don't emphasize her adorable smile, wonderful mama or incomparable drive enough!!

Debbie said...

Kisty - thinking of you and your family - have just sent a donation and wish you all the luck in the world and hope that you can finally get the answers you have been looking for. Just seen the article on the Daily Mail website - people asking where they can donate so hope this generates more funds :-) Debbie

Catherine said...

I have just been reading everything on your blog and you are incredibley brave. I wish you and your family the best of luck in your journey... God Bless~

Catherine said...

I have just been reading about the journey you have been encountering and I believe you are a brave soul. I wish you the best news when youo arive here in the states... God Bless you and your little one~

Yasmin said...

Happy Birthday Kirsty.
I heard this song this morning on Capital & loved it.
Thanks for sharing the link.

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