X-Factor-Tastic!

If you are one of the many (or few!) who don't watch X-Factor...

The X-Factor Finalists, along with JLS and One Direction have covered Rose Royce's Wishing on a Star and the song will raise money for children living with a life shortening disease.  Together For Short Lives and 50 other charities will benefit from the proceeds from the sale of the single .  These charities include Jennifer's Trust which is the only charity in the UK who solely offer services for those with SMA and their families and friends.  Maggie, an Outreach Worker from JTSMA,  was invaluable to us in the early days after Eilidh's diagnosis, providing information and much needed support at a difficult time.

23,500 children and young people in the UK are unlikely to see adulthood; these children, with their families and friends, live with their disease every single day and it not only affects them physically but also mentally and emotionally and can impact on every aspect of family life.  Many, if not all, will need additional support and the charities benefiting from the sale of this single focus on improving quality of life for the families and providing help and support.  These charities enable families affected by life shortening diseases to cope with the everyday.

"Life is precious.  You only get one shot.  You live your life as if it was your last day and basically we try to do that every single day of the year."

So, please, please, please help these children live each day, with the love and support of their families and friends, as it it were their last; buy the single and make a difference today...  Life is so very precious...

More information about the Lloyd Family - as featured on the link above - can be found here.

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!



A is for August & Awareness

two candles by h0pefulmummy

August is gone now and the days take on an autumnal feel. August was Spinal Muscular Atrophy (SMA) awareness month in the States. Families of Spinal Muscular Atrophy has been coordinating a National Awareness Month for SMA since 1996. They hope that by raising the public's awareness of SMA they could realise increased resources for SMA research and better care for SMA patients. The sad truth is, the majority of people, including doctors, nurses and allied health care professionals, do not know about SMA until it directly affects them.

On Saturday 13th August people all over the States lit candles as the sun set to remember those lost to SMA and to give hope to those still living with the disease. I lit two candles that night - one for Eilidh and one for all the other children who have lived or who are living with this genetic disease.

1 in 40 of us are carriers.

As a doctor my first experience of SMA was in a neonatal unit; the baby boy had SMA 1. My next experience was sitting in a neurology clinic with my daughter, "She probably has a myopathy or a muscular dystrophy. It could be Spinal Muscular Atrophy." SMA doesn't happen very often in the lifetime of a doctor. In my lifetime, however, I see it every day.

Approximately 100 new cases are diagnosed each year.

Why don't we know more about SMA in the UK? To be honest, I'm not very sure. SMA is one of the most common life-threatening inherited diseases, second only to Cystic Fibrosis (CF) and yet we are very much more aware of CF as a disease and the affect it has on those who have it. 1 in 25 of us carry the cystic fibrosis gene; 1 in 40 the SMA gene. Approximately 260 babies are born each year with CF; 100 babies per year are born with SMA. In CF, as in SMA, in any pregnancy where both parents are carriers there is a 25% chance that the baby will have CF. Only half of those living with CF are likely to live past their late thirties: SMA affects individuals differently with SMA 1 children maybe living until they are 2 and SMA 2 children will perhaps live until adulthood.

So, knowing that Cystic Fibrosis and Spinal Muscular atrophy have similar genetics and that they are both life-threatening, I'll ask the question again, why are we not more aware of SMA in the UK?

It's a question I have asked myself frequently since Eilidh was diagnosed with SMA. There seems to be so little awareness of SMA within the general public but also, more worryingly within medical professionals and allied staff. What can we do to increase awareness, promote and fund research and raise money to support those living with SMA? I'm not sure; I need to consider this seriously and take action - small steps towards making a difference. Do you have any suggestions? Did you know anything about SMA before reading this blog? What do you know of CF? Are you surprised that so many similarities exist between SMA and CF? I certainly was when I read up on the hard facts. Now that I know though, how can I change our, the public's, way of thinking towards SMA? Let me think it over...

"As one person I cannot change the world, but I can change the world for one person."

Paul Spear

"'Twas the Month..."

As I was writing the previous post I stumbled across this poem at Families of SMA. It's more about SMA 1 but the feelings expressed are those felt by any parent coming to terms with life with SMA.


‘Twas The Month of SMA Awareness

‘Twas the month of SMA awareness, and all over the world
Against all new mothers, sweet babies are curled.
Their newborn clothes hung in the closet with care,
In hopes that they soon will be big enough to wear.

These babies are nestled all snug in their beds,
While visions of birthday parties dance in their parents' heads.
First bike rides, first dances, a high school graduation -
Perhaps even sending out their wedding invitations.

When at the doctor's office, there will arise such a clatter,
Specialists will be called, to see what's the matter.
Away for tests, these babies are whisked like a flash,
For it's something far worse than a cough or a rash.

Blood draws, MRIs, and so much more to go,
You shake your head, cry, scream out the word "NO!"
Something that's worse than any of your fears -
Your child's life may be over in less than two years.

"SMA" the doctors say, and you stumble on the words,
This isn't a name that you've ever heard.
Why weren't you tested, before your baby came?
Spinal Muscular Atrophy, you shudder at the name.

Now pulse ox, now cough assist, now bipap and g-tube.
They can't cough, they can't breathe, they'll choke on their own food.
To the therapist's office! Break down insurance's wall!
Respiratory treatments, surgery, surgery for all!

As you learn your child, your worries will fly,
When you meet with an obstacle, you will fight - sometimes cry.
So up against the world, to the naysayers, say "Shoo!"
You and your child have lots of living to do.

And then, in a twinkling, your child will grow,
When all those doctors told you to prepare for them to go.
You realize that your child is the one making the rules,
And it's leaving these doctors stumbling like fools.

Though your child may never put weight on a foot,
They are stronger than most - you can tell with a look.
They are always moving forward, no time to look back,
So inspiring, they leave no time for you to slack.

Their eyes - how they twinkle! Their faces - so sweet!
Their skin is so soft, minds as sharp as any you'll meet.
Mouths that may never utter a word,
These children don't need voices to be heard.

They have parents - our children are blessings bestowed.
To enrich our lives, to help us be bold.
To teach us that what we feel in our heart,
Is more than enough to give us a start.

To find them a cure, to show them we care,
To tell them no matter what, we'll always be there.
Fighting with doctors, with insurance, with school.
To give them the chance, to provide them the tools.

And to spread on the message, to get out the word -
Because we're their voices, we need to be heard.
Not just this month, though it's a good place to start.
Determination must be in EVERY heart.

So we'll fundraise, we'll write, we'll blog and we'll sell,
We'll bake, we'll sew, and always we'll tell
All about this disease. Until SMA is out of sight.
And we can say - without a bipap, without a feeding pump, without a pulse ox -
"My child, sleep tight."

Barb Zahn

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)

"Have a nice day!"

We certainly have today.

The sun was shining, the skies were blue
And Eilidh was totally independent in her snapdragon!

Yes, totally independent!

What an amazing day!

We are so very, very proud of her;
Eilidh, you r.o.c.k.e.d the Snappie today!

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

Oswald are "pledge"ing

Tom and Oswald are very much still trying to raise money for The Whizzy Wheel Fund.

 

Through Pledge they are trying to raise money to launch and tour with their new album "how much rug? how much carpet?" by selling merchandise and very special rarities... for example, a guitar, tom's tooth, a gig in your own home or a song written for you.

 

Oswald ROCK! and we are so pleased that they continue to support us

So spread the word and support Oswald... but a CD, purchase a guitar or get a song written for you.... and go and see them on Sunday 24th July at Maggie Mays, Glasgow... they will bring the roof down!

And here's an oldie but a goodie...

1 year

1 year.

365 days.

8760 hours.

525600 minutes.

42048000 heart beats.

From Spring

To Summer,

Through Autumn & Winter

And back to Spring again.

It has felt like a lifetime in our family

And we would, if we could,

Change it in a heartbeat.

1 year living with SMA.

Thank you Eilidh for being our guiding star.

xxx

24

24 hours til the
West Whizzyland Way Walk!


Walkers are packing...
tents and gear
mars bars and jelly

beer and whisky.

What will the weather do?

Rain or Shine,

Wind and Hail?

Will the volcanic ash stay away?

We will be with you every step of the way fabulous walkers...

Well, at least to send you off properly with a wee wave goodbye!

You have done a fab job of fundraising so far...

We are totally humbled!

We - well, Fish has! - have featured in some online ROCK! magazines here and here...

so if you are visiting - hello!

But perhaps most importantly, there is still time to donate and make a difference to some one's life as we are fund raising for Muscular Dystrophy Campaign, Turbo Trust, Jennifer's Trust and Eilidh's Whizzy Wheels.

Donate here...

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

Momentum

Fundraising for the West Whizzyland Way Walk next week is gaining momentum...

It's amazing to watch!

We are humbled by everyone's kindness and generosity so far, but please keep donating...

All monies will be split between

The Muscular Dystrophy Campaign
The Turbo Trust
Jennifer's Trust
& Eilidh's Whizzy Wheels.

Thank you to everyone who has already donated -
you will make a difference to someone's life.

Rock Legend Gets Whizzy

Now Eilidh's grannie, aka rockchickgranny, works for Fish
And let's be honest....
What a ROCK L.E.G.E.N.D he is!

Today Fish announced on The Company website that He, some of his fans and rockchickgranny are walking the West Highland Way for Eilidh and some of her favourite charities!!

Wow-weeeeeeeeeeeeee!

So get your walking boots on and join them if you are interested:

"WEST HIGHLAND WAY

27TH MAY – 2ND JUNE

As many of you know Elspeth’s 2 year old granddaughter Eilidh has been diagnosed with Spinal Muscular Atrophy Type 2 and, although very bright, cheeky, and mischievous, is now wheelchair dependent.

The monies raised from this year’s walk will be shared between Eilidh’s Whizzy Wheel Fund (http://www.whizzywheels.blogspot.com/), a fund solely providing equipment for Eilidh, and three charities who have been instrumental in helping Eilidh and her family over the last few months: The Muscular Dystrophy Campaign (http://www.muscular-dystrophy.org/), The Turbo Trust (http://www.theturbotrust.org/) and Jennifer’s Trust (http://www.jtsma.org.uk/).

thanks for all your support with this
all the best
Fish"

Eilidh's Moves!

I am so, so sorry that I haven't posted in ages, but here is a world exclusive! (well, not quite!)

After some "peep-peep"ing

and

"up.... down"ing

and

lots of

roundandroundandroundandround

and with some tantalising and teasing with marshmallows...

Eilidh finally moves with purpose and direction...

Check her out!

We are so very proud of her...

Thank you once again to everyone who has made this possible:

We are forever endebted to your kindness and generosity.

Donations for The West Whizzyland Way Walk

Here's a page for the walkers of

The West Whizzyland Way Walk

to link to for their sponsors and donations...


Best of luck with your Fund Raising and


Thank you, Thank you, Thank you!

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

the MADs!

I've been nominated in the MADS 2011 which celebrates the best of UK Mum and Dad blogs!

What's more I've been nominated for the Most Inspiring Mad Blogger Award sponsored by Mothercare... how awesome is that!  Especially considering I'm just trying to do my best for my daughter! 

So if you would like to nominate me again - the blogs with the most nominations go through to the next round - please hit the button on the right and fill in the form..

A Retirement Gift

A Retirement Gift and yet so much more...

My friend's dad Kenny has worked for the past 30 years for North Lanarkshire Council as an Emergency Planning Officer. 

He retired last week and he decided that he wanted his Retirement Gift collection to go Eilidh and her Whizzy Wheels...

Well... he has just donated £315 in cash (and there has also been a few paypal donations too.)

How totally fantastic!

We are so very humbled: Thank you, Thank You, Mr M!

oh, and "Happy Retirement"...

Enjoy being a full-time Grandpa and Taxi Driver

;)

Movie Madness

The Primary 1s and 2s of The Compass Primary School in Haddington hosted an "Enterprise Movie Party", raising a fantastic £235.00 and they decided that they would really like to donate the money to Eilidh's Whizzy Wheel Fund ...

How inspirational!

Now that Spring is springing and Eilidh is enjoying being outside a little more we think that it might be time to consider a trike (Tomcat Trikes) for her and would love to dedicate this money from The Compass to that - I hope that they approve!

So a BIG Thank You! to the Primary 1s and 2s @ The Compass

and a huge kiss....

mwah!

from Eilidh

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!