Snappie - one year on

Snappie the Snapdragon came into our lives a little over a year ago; she has not solved all of our problems - far from it! - but, with time, she has brought fun to our family (just as Dan from Dragonmobility promised). Snappie is most definitely a girl: temperamental, bolshie and really quite gallus - perhaps she has inherited this characteristics from her proud owner? Snappie is fast and can turn on a tuppence; she even does wheelspins!  She's travelled through parks and fields, seen the sights at museums and now ventures to nursery.  She's been clarty, mankie and pretty maukit too.  I think that Snappie thrives on thrills and excitement  - a bit like Eilidh! 

extreme flowery makeover

april '12

With Snappie we have come far in the last year from a point of hatred  (yes, I would put it that strongly!) to one of acceptance - well kind of!  We have said goodbye to the buggy and moved on to independence through the wee Micro first then to Snappie.  From her first moves, to becoming more confident, to now playing "tig!" with Niamh, Eilidh is blossoming. 

Eilidh loves Snappie - that much is evident as her eyes light up at the mention of heading out with her - and loves the independence that she has gained from having a friend like Snappie.  Eilidh's love is contagious, she is teaching us about life with Snappie; she is breaking down walls and leading the way in her own definite and distinguished way.

So once again, thank you to everyone who made this possible through The Whizzy Wheel Fund and thank you to all at Dragonmobility who made and continue to make this possible. 

We, as a family, can now look forward to many, many more Snappie adventures. 

And here's the latest instalment in the Snappie tale:

11/11/11 is coming...

Nick and Diane are getting married!

Whoopeeeeeeeee!!!

On the 11th day of the 11th month of 2011 they will become husband and wife and we wish them much love, laughter and happiness, now and always.

Nick and Diane suggested to us a while ago that they would like to dedicate their wedding list to Eilidh: they have been living together for over 10 years and do not feel that they need or want anything and would much rather that their guests donated to Eilidh and The Whizzy Wheel Fund. They have 2 little girls, one who is just about the same age as E and they cannot imagine what we are going through and want to support us.

We are blown away and moved to tears by their kindness; so if you are visiting here to donate to their wedding list, thank you and we look forward to seeing you at the wedding to celebrate Nick and Diane's marriage.

To donate, please click on the button below and it will take you through to paypal

A Big Thank You!

We need to say a huge big THANK YOU to Diageo for matching the sponsor monies raised by Mary Colgan during the West Whizzyland Way Walk.

Mary raised a staggering £1000 and Diageo have matched this and donated  £1000 directly to the Muscular Dystrophy Campaign.

Thank you Diageo for supporting such a worthwhile charity from all at Whizzy Wheel Central!



The West Whizzyland Way Totaltastic Total!

It's the day that we've been waiting for...

The BIG announcement!

On the 27th May Fish and his intrepid walkers took to The West Whizzyland Way aka The West Highland Way to raise money for The Turbo Trust, The Muscular Dystrophy Campaign, The Whizzy Wheel Fund and Jennifer's Trust.  They walked through four seasons in one day - experiencing some awful weather, wind blown tents and soggy sleeping bags along the way - to complete the world renowned walk in 7 days. 

At 96 miles The West Highland Way starts at Milngavie passes through Mugdock Country Park, follows the shores of Loch Lomond, passing Ben Lomond, through Glen Falloch and Strathfillan, crossing Rannoch Moor, past Buachaille Etive Mor to the head of Glencoe, climbing the Devil’s Staircase, descending to sea level to cross the River Leven at the head of Loch Leven before entering Lairigmor and Glen Nevis and finishes at Gordon Square in Fort William.  The beautiful landscape changes from lowland moors, dense woodland and rolling hills, to high mountainous landscapes.


Each and every walker walked their little socks off and I am proud of them all.  I am also very grateful and thankful for every mile that they have walked, not only for Eilidh but for the three charities that we support. 

the very beginning...

t.h.a.n.k y.o.u !

Christoph Free, Mary Colgan, John Strain, Janice Booth, Jamie Symington, Caroline Thain, Jim Mitchell, Gill Adams, Nick & Cath Jefferson and Bella, Jim Pender, John Boyle, Ian Marshall, Graeme Congalton, Rab Purdie, Drew Sutherland (who unfortunately couldn't make it to the walk through injury - hope that it's better!), Joe Vincent, Ian Allan (even though he was getting married) and Sue Arber.

Thank you to Ian Mitchell for driving the support vehicle and generally looking out for the walkers - what a great help you were! A total foot-saver!!

Thanks also to Ross Prentice for donating the fuel to shuttle everyone and their luggage to and fro between camps - the support vehicle would have been stuck without it! Thank you for your kind donation.


I have to say a big thank you to  Fish because without him this wouldn't have been possible; he brought these people together, they wanted to walk with him.  Fish, you rock!  Thank you from the bottom of our hearts.

@ the off

t.h.a.n.k y.o.u !

And to Eilidh's granny, aka Rock Chick Granny; 

the end... at last!

t.h.a.n.k y.o.u !

Without you none of this could have happened!  Your love for Eilidh is abundant - you would do anything for her and here you are walking 96 miles with a dodgy knee to raise money for her and the charities who have supported us over the last year - what a fantastic grannie you are!




And now...

drum roll please...

the final total is

a whopping,

a staggering,

£8304.47!


How awesome! 

t.h.a.n.k y.o.u !  t.h.a.n.k y.o.u !  t.h.a.n.k y.o.u !

to everyone involved and to all of you who donated money and to Fish fans the wide world over - you did this! 

t.h.a.n.k y.o.u !







(Monies divided as such: £3094.47 The Turbo Trust; £3000 The Muscular Dystrophy Campaign; £1209.97 The Whizzy Wheels Fund - donated directly for this fund; £1000 The Jennifer's Trust)

(Please note that the total is not including gift aid from monies raised through Justgiving)

Some "tri"ing love

A not-so-random act of kindness, but it has blown us away no less!

bronnie (left) ready for the off!

My wee cuz Bronnie presented me with a piggy bank recently - a collection of pennies from work colleagues and friends for a triathlon that she had completed in the Cotswolds on 5th June:

she swam 200m
she biked 20km
she ran 2.5km



to raise some pennies for miss eilidh

Bronnie's a superhero in our eyes!




...and here it is, the amazing totally total-tastic total that she raised

£188.68!!!





thank you, thank you, thank you, bronnie!

love you loads
xxx

THE Wedding of the Year!

Nick and Diane are getting married!

Whoopeeeeeeeee!!!

On the 11th day of the 11th month of 2011 they will become husband and wife and we wish them much love, laughter and happiness, now and always.

Nick and Diane suggested to us a while ago that they would like to dedicate their wedding list to Eilidh: they have been living together for over 10 years and do not feel that they need or want anything and would much rather that their guests donated to Eilidh and The Whizzy Wheel Fund.  They have 2 little girls, one who is just about the same age as E and they cannot imagine what we are going through and want to support us.

We are blown away and moved to tears by their kindness; so if you are visiting here to donate to their wedding list, thank you and we look forward to seeing you at the wedding to celebrate Nick and Diane's marriage.

To donate, please click on the button below and it will take you through to paypal

Hugo

I thought that it was about time that I posted some photos of the one, the only...

HUGO MOUSE!

I have to thank Sarah Kidd for the love, care and attention that she puts into each individual and unique Hugo...

I think that each stitch goes someway to show that she puts her heart and soul into Hugo with the hope that he will make a little one's day a little brighter...

Hugo Mouse

Hugo & Friends

And some of the little details I adore...

A heart full of hope x

Each little stitch of love

And to the shining stars, Eilidh and Hugo, with

Love & Laughter,

Hope & Grace,

and

Touch & Tickle.

Best buddies



Thank you, Sarah for being so very inspirational
xxx

It's Snappie Time!

The adventure that we have been fund-raising for happened last week and we have so many "thank you"s to offer to everyone who made it possible for Eilidh and our family; without you this would never have been possible.  We are forever indebted to you kindness and generosity so

thank you, thank you, thank you!

For us however, thank you will never quite be enough to cover the magnitude of the gratitude that we feel.

Our trip to Cambridge was an adventure and we were welcomed at DragonMobility with open arms.  Finally we got to meet Dan, Ruth and the some of the DragonMobility Team.  Each one has played a huge role in getting Snappie ready for Eilidh.

And then there was the Snappie Moment...

Glorious in Red and Eilidh's!

We spent the day getting to know Snappie:

her DCB, her elevators, her seat, her brakes (and there are 3 sets of brakes!), her batteries, her standing frame and the emergency "oh, my goodness! she's out of control!" button aka the off switch!

We read the manual... well, flicked through it really...

The seating was adapted, the DCB moved, the footplate played with...

And Eilidh?

She watched curiously and a little apprehensively.

She stood in Snappie...

yipee! i'm standing tall!

And she sat in Snappie, Bella always by her side or near by:

bella along for the ride...

Niamh stood on the back - the moment that she has been waiting for since we first met Lou (which now seems forever ago! - a proud big sister, putting her trust in Eilidh's driving completely!

Eilidh played with the buttons:

yellow up to the sun,

green down to the grass

and red the most cute "peep! peep!"

We helped Eilidh outside and, for the first time she was able to imagine exploring the outside world independently.

We coaxed and cajoled...

& Dan tried his magic...

what's up?  let's go!

But Eilidh wouldn't move!
Bella drove.

Mummy drove.

Daddy Drove.

Eilidh "peep! peep!"ed.

Eilidh wouldn't (but not couldn't!) drive independently! 

Oh, she's so, so canny!  Why drive when you have chauffeurs?

And then it was time to leave:

We (David) learnt to dismantle Snappie and drive her into the car boot: and yes! she did fit - hooray!  Thankfully, the original Yellow Peril was designed to fit into the Everard's VW Passat Estate some 30 years ago so it was able to go into car of the same model!  Thank goodness...

out & about at Wimpole

We were lucky enough to be able to spend some time with the Everards the next day at Wimpole Estate on the Home Farm with lambs and piglets and chicks and some blooming awful driving of the Snappie on our part...  we hit walls, gates and ran over our feet numerous times...  I think I still have the tread marks on  my boots as evidence! Spring had sprung and finally Eilidh was on her way to some outdoor independence, exploration and fun!!! 

We had a great day out with a truly inspiring family who have helped enable Eilidh, and so many other Dragon Riders, to live their lives and explore their worlds more independently and have fun on the journey too. 

Thank you, Dan, Lou and Ruth and all those at DragonMobility for your vision and dedication: you inspire us!

And so we are home and coming to terms with the new addition to the family... Snappie is so very welcome but she brings the realisation that our lives have changed and that Spinal Muscular Atrophy is so very much part of it. Eilidh is teaching us and showing us the way - it's funny, we think that we teach our children, but actually it is very much the other way... even if Eilidh is still needing some chauffeuring...

And to end, Thank you! once again to everyone who has made this possible... to everyone who has donated, to The Ceridian Pay Back Foundation, The Jospeh Patrick Trust and to Turbo Trust, to the Fun' Raisin' Crew at NAG, to The Wheelie Good Dane girlies, to all Fish's Fans... we could go on, but the sentiment is the same...

THANK YOU to each and every one of you!

From the bottom of our hearts we are grateful and forever indebted

Much Love

The Whizzy Macfarlane Family

xxx



Home and in the garden - spring has sprung!







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!

Wedding Bells

We have the pleasure of knowing D&N, 2 wonderful people who are getting married this year on 11/11/11...

D&N suggested to us a while ago that they would like to dedicate their wedding list to Eilidh: they have been living together for over 10 years and do not feel that they need or want anything and would much rather that their guests donated to Eilidh and The Whizzy Wheel Fund...

They have 2 little girls, one who is just about the same age as E: they cannot imagine what we are going through and want to support us... this is what they would like to do...

We are blown away and moved to tears by their kindness...

Thank you, D&N

A Wheelie BIG Thank You!

This year could have been so different...

It has been a difficult and painful year
With Eilidh being diagnosed with
SMA
But we have survived
& perhaps
Grown stronger too.

We have been humbled by peoples'
kindness of spirit
and
generosity.

We have been carried high
by the love
and support

of family and friends.

Thank you to each and every one of you who has donated

or sent words of comfort or wisdom.

You have made this year one to remember:

and we are remembering it not for the pain that it has brought us

but for the love and support that we have received ...


And we'll leave the last words to Eilidh...

Here's to 2011!
May all your dreams and wishes come true...

Peigi's Bake & Buy

Peigi and her little helpers at Frew Terrace baked and baked and baked over the weekend to create a truly scrumptious display of cakes and muffins, tablet and no-tray bakes to sell yesterday...

By the end of the day only crumbs were left...

But delectable tasty morsels had been replaced by a truly magnificent box of donations...

And the total?

A fabulously tastyand yummy £218.60 and not to forget the 5 cents too!

Thank you to all the Nigels and Nigellas who baked their little socks of and helped raise some money for the Whizzy Wheel Fund and a special thanks to Peigi for being a wonderful friend...

Thank you

xxx

Coffee Time

A wee surprise today...

Friend's of "wee Ellen", aka Eilidh's granny, Irene and John Ballentyne held a Coffee Morning...

"Everyone gave generously and willingly" to Eilidh's Whizzy Wheel Fund and raised...

a
totally
&
utterly
spectacular
£170!

A BIG thank you to Irene, John and their coffee morning friends...
we really are very grateful
xx

A fantastic surprise...

I heard a letter drop through our letterbox yesterday and went to pick it up.
I didn't recognised the handwriting:
I opened it quickly.

A card and a folded piece of paper...
A note from a friend's mum:
St Cadoc's Golf Society raised £300 for Eilidh's fund...

WOW!

and she is planning to beat her husband's total over the next few months with another donation...

How totally inspiring!

How A.M.A.Z.I.N.G!

and so, so very humbling too...

So a huge BIG thank you to mags' mum and dad - Patricia and Michael - and their friends and buddies too.

"Be brilliant together" - Logica Donate

A little letter arrived from Logica on Saturday...

Excitedly, I opened the envelope...

and

Whooooooopeeeeeeeeeeeeeeeeeeeee!

£650

a cheque from Logica's CEO!

Brilliant! Brilliant! Brilliant!

Thank you, Mr CEO, we're now £650 closer to our target.  And thank you to Sally again - you made all of this possible x

Fish Fans Donate

Haddington was visited by Fish Fans over the weekend as the FishHead's Club was in residence at St Mary's On Saturday...

Rock Chick Grannie, aka Eilidh's Grannie, collected donations from some fans and raised a fantastic

£170

F.A.N.T.A.S.T.I.C!

Many have also donated through Fish's Official Website over the past 4 weeks so...

Thank you!
Thank you!
Thank you!

4 weeks on...

... and we have made so much progress...

and there is still so much to happen...

and even more in the planning and yet to come!

It's just been so amazing!


We have until the end of November to raise the money for Eilidh's Snapdragon if we hope to get her Snappie in February, so we will continue on...

raising money and, hopefully, raising awareness of SMA and early mobility in toddlers like Eilidh and her wee friend Beatrice.


So please keep spreading the word...

And thank you all for coming with us on this journey.

xxx

The Wheelie FUN' Raising Crew

There are 4 woman... or should I call them ladies, lassies or girls?...
There are 4 ladies who work with D...

Will I name them?
Will I?
YES!

Liz,
Diane,
Suzanne,
& Gillian.

And they are all working very hard to raise some pounds for Eilidh...

There's the "Gold Rush"
& The "Wheelie Wild Night" Out
& the Christmas Hamper...

They are knee deep in paper and staples as they print 3000 raflle tickets for
the "Wheelie Great Raffle"
and
Just generally spreading the word...

You are awesome!

You are great!

And we cannot thank you enough...
Will tea, cake and an Eilidh cuddle suffice?

Update...Update...Update

The generosity continues...
A staggering £1802.37 donated in the last 48 hours
to take us to a grand total of...
£5817.33!

We are so stunned...
And everyone is getting on board with more fund raising ideas which is totally awesome!

Thank you for inspiring us to continue
and for all of your kind words and words of support...
they mean so much...

Now, there will be radio silence over the weekend...
This week has been exhausting and I need some time out...

But first it is the Muscular Dystrophy Campaign Conference in Glasgow tomorrow and Nicola Sturgeon is the Keynote Speaker who will no doubt be discussing the Mackie Report.  The Mackie Report,  which is the result of an Inquiry into the Provision of Services for Neuromuscular Disease in Scotland, emphasises that inequalities exist in the provision of specialist neuromuscular care and social care. 

I only wish that I could think of a sensible, well-thought out question to ask her.  I wonder if she will listen to what I have to say about our experience...

Some wonderful news...

just as I was writing about waiting...

Ruth from DragonMobility phoned today and spoke to D.

Eilidh has been put on the waiting list for her Snappie!

Whoopeeee!

The waiting list is getting longer and DragonMobility don't want the "little ones" to miss out...

So we need to get a wiggle on... we need to get fundraising... Snappie may well be ready for February!

and more good news... DragonMobility may consider loaning us a chair while we wait for Eilidh's to be made...

whoopeeee!

whoopeeee!

whoopeeee!

You see, this is why deciding to go with DragonMobility was easy... the company ethos, their care and attention, their empathy...  I trust them and am looking forward to becoming part of their "family"...

Eilidh has a companion on the waiting list too... a little girl called Beatrice.

These two little ones have SMA and are keen to get moving, both have families trying to raise the money to fund wheelchairs to enable them to seek as normal a life as possible.  Beatrice is 6 weeks older than Eilidh and was diagnosed with SMA in July.  She was visited by Lou and the Snappie last week and Beatrice quickly took to the SnapDragon... if you would like to see some videos, please take a look at their web page Get Beatrice Mobile.  If you are feeling generous, dig deep and donate some money towards Beatrice's mobility.  After all, we can't put a price on our children's mobility...

So perhaps waiting isn't such a terrible thing...

Good things do happen to those who wait...