The £29.24 Challenge

 

 

 

 

I don't remember much these days but one fact from the Muscular Dystrophy Campaign Conference 2012 has stayed very much in the forefront of my mind;  it's amazingly simple:

 
"If every family affected by muscular dystrophy or a related neuromuscular condition raised £29.24 this year we would meet the fundraising requirement set for Scotland’s contribution to fund our research work and support services."  

WOW!  

 

Isn't that amazing - £29.24 can make a difference to someone living with a neuromuscular disease.

 

So here I am blogging and begging  - I won't jump out of a plane but I will beg, borrow and steal! - for your help, for you to Make Today Count. 

 

 I ask you - my family and friends and everyone who loves Eilidh-  to donate £2.92, £29.24 or even £292.40(!) to  the Muscular Dystrophy Campaign for those living with neuromuscular disease in Scotland.

 

Family and friends by means of six degrees of separation can you pass this challenge on, sharing on Facebook and Twitter #2924challenge to #maketodaycount?

 

Will you take up the challenge for Eilidh and for others living with neuromuscular disease?

 

 To go to The £29.24 Challenge JustGiving Web page follow this link:

 

http://www.justgiving.com/Eilidh-Macfarlane

 

 

 

 

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:

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

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

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!







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

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

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...

In the News Today...

and here's the link to the online article

In the beginning...

In the beginning

there was

mummy Sheonad

who met

daddy David.

2+1=3

and baby Niamh was born.

3+1=4

and then followed baby Eilidh.

A happy family,

full of love,

laughter

and happiness.

A future bright and ever possible.

And then that changed:

the future was no longer quite as clear.

Life had changed beyond their comprehension.

What happened to bring about such a change?

On Thursday 27th May 2010 Eilidh, at 16 months old, after months of worry, was diagnosed with Spinal Muscular Atrophy Grade 2.  A diagnosis which changed our family's perceived future and robbed us of hope.  A diagnosis which means that Eilidh will be wheelchair dependent. 

So the idea of Whizzy Wheels for Eilidh came to being and, in time, the realisation of the cost of Eilidh's independence and mobility became apparent...  The Whizzy Wheel Fund was born as a result of this - a Fund to raise money to enable and empower Eilidh to be the best that she can be and to give us hope.  Hope for Eilidh's future...