Sam The Boccia Player

Sam has SMA just like Miss Eilidh and he is an experienced Dragon Rider!

Sam also has a mean eye for a game of Boccia apparently.

Royal Mail

What is Boccia? 

Boccia (pronounced 'Bot-cha') is a Paralympic sport introduced in 1984 and athletes throw, kick or use a ramp to propel a ball onto the court with the aim of getting closest to a 'jack' ball.  Boccia is designed specifically for athletes with a disability affecting locomotor function.  You can find out more here

At the moment Sam plays using a piece of guttering to direct a propel his ball onto the court but he is hankering after a boccia ramp and we would like to help...  So please spread the word and donate if you can: you never know, Sam may well be a Para-Olympian in the making!

Check out Sam's Boccia Page on Facebook here

4 more sleeps

4 more sleeps until we meet Snappie @ Dragonmobility!

Hearts and Hands

Liam is a little boy in America.
He has SMA.
He's a Snappie Rider.
He's awesome at fancy dress - yes, that is him dressed as R2D2!
And he has a fantastic mum: Lynn.

Lynn is a talented lady
With a beautiful eye
For Simple design
That demonstrates
Elegance & Grace.
Check her out at
Satsuma Press

Lynn, although I have never met her in person,
Has a heart of Gold
And has organised
Hearts and Hands for Japan -

Hearts and Hands is a community effort to help Japan.
Independent artists and studios are donating prizes for a Raffle.
(now, we know we all love a good raffle!).
So, please follow the link, buy a ticket at $10 and donate to Japan...

What has happened there is terrifying and, if we can help in any way, we can make a difference...

And to those who buy a ticket or two - Good luck!

"What has happened and is happening in Japan is heartbreaking – and we believe there are ways, both big and small, to help. This is what we are able to do – from the heart, made by our hands." - Lynn Russell

Hugo to join the family!

Hurrah! Hugo is ready...

Hugo is a little mouse whose story has been told in the previous 2 posts.

Find out more about him on his website here... check out the photo of Eilidh on the homepage!

And here is the email that Bella-Bear received today...

Hello Bella-Bear!

Sarah has told me all about you and i am very much looking to meeting you and Eilidh! It sounds like you have a lovely home and a wonderful family, and i'm so pleased to be coming to live with you in Scotland, it will seem like a very long journey from Yorkshire! I am sometimes a little shy at first, so i might be in need of some of those great big squishy cuddles!

I'm so pleased to hear that Eilidh will be soon getting her very own Whizzy Wheels! Sarah is hoping to post me within the next couple of days so that i get to you in time for when Eilidh gets her new wheels...

I'm very much looking forward to meeting you soon.

Lots of Love and cuddles

Hugo x x x

Ps. If you get chance, Sarah would love to here how i am settling in and if you do take any photos, she would love to see them as they are always very special x

Whooopeeeeee!

The Macfarlane menagerie has a new friend joining them and we can't wait...

Safe travels, Hugo...

Hugs & Kisses to Sarah before you leave...

Whoopeee!

Diary Days from 15/9/10 ...
More on Hugo the Mouse:

Bella-Bear did it!

Eilidh is to get a Hugo Mouse...

Bella got an email from Sarah - she let me read it and I cried tears of joy...

How exciting... I'll keep you posted as to when Hugo will join our mad family... I just hope that he gets on with the menagerie of Flopsy, Baby, Susie and Bella...

I hope that Sarah doesn't mind but here's a little bit of her email...

"Hello Bella Bear and family!!!
Thank you very much for your lovely email and for telling me about all about Eilidh. I would love to make a Hugo Mouse for her. I think the words you have chosen are really nice and will help to make Eilidh's Hugo very special. I will say that I have quite a lot of children who would like to receive a Hugo, so it's difficult to say how long it will be until you receive yours...  ...But i am very much looking forward to making Eilidh a Hugo and will keep in touch and let you know once i have begun making him and again when he is finished so you know when to expect your new friend!!"

Whoopee!
How very exciting...
I can't wait to meet him...

Hugo Mouse

Diary Days 21/8/10 ...

Some time ago, an email was sent to a girl called Sarah who is inspirational...  please read on to find out more....

Hugo is a mouse. He is handmade and hand-stitched with love by Sarah.

He is created for children with life-threatening or terminal illnesses or those with long-term illness or disability, to offer them love and support in times of need.

He is so, so cute... take a look at the website at Hugo's Hope

two bears at dawn

Bella-Bear thought that Eilidh might like a Hugo Mouse to be there for her on her journey with SMA so she wrote an email to Sarah this morning...

Hi Sarah

My name is Bella-Bear and I'm writing to you to refer my little girl friend Eilidh who I know would love to receive a Hugo.

Eilidh is 19 months old and was diagnosed with Spinal Muscular Atrophy 3 months ago.

She is beautiful and content and happy: she is also very strong willed and determined.

Eilidh makes all those who come into contact with her smile.

She gives me great big squishy cuddles and I love her so, so much, but I think that we, Eilidh and I, need someone to help us and give us cuddles : we thought of you and Hugo!

You see, Eilidh's mummy and daddy are looking into getting Eilidh a wheelchair and Eilidh gets a little scared when in the chair - there is plenty room for Hugo to come on too and join us on her Whizzy Wheels!

We live in Glasgow in Scotland and I have a lovely home full of fun and laughter but it's also just a little sad at the moment as everyone is coming to terms with Eilidh's diagnosis.

The words that come to mind when I think of Eilidh are: touch & tickle, love & laughter, hope & grace.

Eilidh's mummy has started blogging about our lives but it hasn't gone live yet, but you are more than welcome to check it out...

I've attached a couple of photos too - one of eilidh and me when she was little - it's my favourite picture of us together! and a more recent one of her on a swing - she loves swings, Sarah!

Well, I'm off for some honey sandwiches for lunch

Love and cuddles to you and kisses for Hugo

Bella-Bear

xx

Hugo Mouse is made with love by Sarah and each one is individual.  Sarah know what it is like to be physically limited and in a wheelchair; even though I have not met her, she inspires me.  She does not want our children to be alone at night or when they go in to hospital. She wants them always to have Hugo near, inspiring them and filling them with hope.  The words that Bella-Bear has asked to be embroidered onto Hugo are words that mean so much to me today, but I hope, in time, that they will come to remind Eilidh how much she is loved and offer her hope and inspiration when times are hard.


Not every child who is referred will be blessed with a Hugo, so fingers and toes crossed that my beautiful little Eilidh is... Bella-Bear is hoping too...

9 more sleeps

only 9 more sleeps 'til we travel to Cambridge...

only 10 more sleeps 'til we meet Snappie @ Dragonmobility...

it's exciting and scarey!

we are so very, very grateful for the love and support we have experienced from all of the Whizzy Wheel Supporters...  without you, this wouldn't be possible.

Thank You!

Growing and growing...

Eilidh is growing like a beanstalk...
Taller and taller and taller...

She has nearly outgrown her Panthera Micro so it's time to talk self-propelling wheelchairs again...

We are due to see our lovely OT at our local Wheelchair services...
shame that they cannot offer Eilidh a suitable chair!
And pick up Snappie from DragonMobility
And see our favourite GBL Wheelchairs Rep too...

All in the space of 4 days:
23rd-26th
What a busy March!
And all to maintain our little girls independence which I value so greatly and hold close to my heart!
And it is so, so very worth it...