Whizzy Wheels Again

My daughter Eilidh’s independence is central to this post today which is supporting Nick Thomson's 13 to 3 marathon run on Sunday 24th April, the Virgin London Marathon.  Nick aims to raise £2000 towards a new 3d powered wheelchair.  Our family is only as independent as Eilidh is, only has happy as she is.  Her wheelchair allows independence and quality of life for us all.  

The Snapdragon is way ahead of what the NHS can provide and other privately funded similar powered wheelchairs, allowing 3d movement but also, more importantly, enabling Eilidh to interact eye to eye with her peers with the ability of the chair to move between a floor position and standing height.  The chair empowers Eilidh to be independent and confident so that she can be part of more beyond her immediate family. It is responsive and manoeuvrable, allowing her to explore the world around her.

But this chair comes at a price.  £24,113.  We have raised this once before – by asking friends and strangers to contribute to a Whizzy Wheels Fund (here on this blog) - for the Snapdragon she got when she was 2 years old, but this chair now needs replacing and we are finding it necessary to approach charities to help raise this total.  It is not easy to do this, to ask for help, to ask for money, to admit that we cannot raise this huge total for our daughter, but it is a mammoth task.

Eilidh's independence, however is priceless.  How can we put a price on her joy, her quality of life?  It's simple, we can't and as a result we need to do what is the best for her and the SnapDragon is the best. Through enabling and empowering Eilidh we too are learning; she teaches us how it is to live with disability.  She brings joy and I am hopeful of a bright future, but we need to ask others to help maintain her independence, raising funds towards a new powerchair because we cannot do it alone in the time frame required.

I ask that you consider supporting my daughter Eilidh maintain her independence by donating to Nick's Just Giving page which is supporting the Turbo Trust. The Turbo Trust believes in good mobility for all, regardless of age or ability, and provides grants for disabled people to buy the most versatile powerchairs available.approving a grant towards the total cost of her powered wheelchair.  Alternatively you can donate at GoFundMe https://www.gofundme.com/whizzywheelsagain

"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!

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!







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...

Tears of Joy

In all the commotion I haven't told you about Tuesday...

What a momentous day!

Eilidh's Panthera Micro arrived...

What a beautiful moment...

She knew what it was as soon as she saw Stewart from GBL Wheelchairs

and after some initial hesitation we put her in the chair and

whoooosh!

She was off...

For the first time in Eilidh's life she moved towards me, independently and under her own steam, to give me a hug...

I cried huge tears of sadness, but they were tears of happiness and joy too as Eilidh took her "first steps" to independence.  And I can tell you, mine were not the only tears shed that morning...

And since then...

Crikey, there's no stopping her!

She's turning circles, going backwards, negotiating doors, tormenting her sister, raking in bins, pulling out books from the bookcase, touching sockets, getting burnt on radiators, eating chalk... you know... all the stuff toddlers do naturally, the stuff that teaches them about their environment... and the naughtiness and intrigue that they do everything with amazes me ... and now EIlidh can have some wheeler fun too!

Joy.

Deep joy.

And you know what?  And this surprises me.  I still only see Eilidh and her smile. Just Eilidh. No chair. Eilidh is just Eilidh, but perhaps she's a little happier now too: she's finally independent.

 

I promise to post photos and perhaps a video link soon.

Baby Steps to Independence

Whoooopeeee!

The decison has been made.

And I'm sure that it is the right one for Eilidh and for our family.

No waiting for the NHS and paperwork to be completed and endless waiting lists...

50% deposit on the Panthera Micro paid.  Job done!

I have been pro-active and it feels good!

Now we just have to wait and see how long it will be until it arrives...

Patience, Sheonad, Patience!

The Panthera...

what a lovely day...

heart-breaking too though as I saw Eilidh in a wheelchair...

independent in a wheelchair, mind you!

A rep from GBL Wheelchairs arrived this morning with this dinky little chair and, after quickly assembling it - and it literally was a two second job of putting the wheels on - I went with Eilidh through to the kitchen... without the rep as Eilidh certainly had a wee touch of stage fright!

I strapped her in and added the wide neoprene band which we used as additional truncal support, adding in Bella-Bear too for company.  Within seconds she was moving the chair with one hand, then two and then, gaining momentum, she pointed outdoors; she was off!  After much waiting, and some heart-break too, here were Eilidh's first "steps"... what an amazing moment!  There is hope, so much hope where a few months ago there was none,  for Eilidh's independence... And what a proud mummy I was too...

D was unable to join us today and so tonight, with the girls tucked up in bed, I showed him short video clips of this momentous day.  He was moved and quite rightly - sadness that our child is wheelchair dependent but happiness because, finally she had gained a little independence and she was so happy and proud of herself...

I found out today that Eilidh may be able to get a Zippie Simba through the NHS.  After a test drive of this chair tomorrow I'll try to find out how quickly we can be seen at WestMARC so that we can make a decision as to how long we can wait until we get Eilidh the chair which will, to some extent, change her life!  And then the toddler or "wheeler" fun will begin...  Watch out everyone, Eilidh is on the move!