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.

WOW!

Well...
We have been  blown away...
totally
and
utterly
blown away!
We are overwhelmed by the response that we have had...
People really are good and kind and so very generous too...

So, drum roll please....

We have raised a
massive £2504.96
in the last 48 hrs,
taking us to £4014.96...

Wow! WOW! WOW-WHEE!

and we have featured on Fish's Website and Facebook page,

been tweeted by Lorraine Kelly

and had media interest...

crikey crivens...

Keep up the good work

and thank you so much for all the donations to date

xx

Ripples....

I hardly slept overnight...

At first I felt so sick having just made this blog "live"...

Then I was, well sort of excited as people started sharing the link...

Then Niamh woke up at midnight...

So I've had about 4 hours sleep!

And when D offered me a lie in this morning, I turned it down...

So desperate I was to get online and see what was going on!

Whoopeee!

We are making ripples through Facebook...

We are sharing our story!

Our little community is raising us up high and offering their support and love...

We really do have wonderful friends

Thank you

and we mean it from the bottom of our hearts

x

Donations Welcome!

The PayPal Account has been verified...

We are up and running...

So if you want to sponsor Eilidh

to be beautiful & brave,

to grow up independent & strong-willed,

to travel 1m in her Panthera, chasing her sister,

to look gorgeous in her SnapDragon,

or just to be Eilidh...

Please sponsor her...

If you would rather wait...

and buy raffle tickets - yes, there will be a raffle!

or attend one of our evenings of entertainment - in January - details to be confirmed...

or sponsor me to do my Channel Swim

- not across the actual Channel but still 22 miles! - more details to follow

or hold a fund raising event yourself

or do something daft and fun and be sponsored...

Then that's ok too...

Just remember: we cannot put a price on Eilidh's independence but we do so want her to be independent... if you make a donation you will be helping achieve that and we are so very grateful...

So thank you!

x

Raising Money

It's difficult for us to do this,

to ask for money to help our daughter gain the independence that she deserves,

but that is what we find ourselves doing.

We did not ask for this to happen to Eilidh.

We can not make her better

but we can, hopefully, give her all the opportunities that we can.

But we need your help...

The NHS will not supply Eilidh with a powered chair until she is 3.

And yet a toddler of her age is already mobile and naturally inquisitive, learning as they toddle and fall.

Eilidh needs that opportunity, the opportunity to be mobile and independent.

She deserves that opportunity.

The chair that we have chosen to pursue for Eilidh is the SnapDragon which will give her the best start in life.  Unlike the chair that the NHS may provide when she is 3, this chair lowers to ground level and raises too, allowing her to play on the floor with friends and hold hands with mummy and daddy when out for a walk.  As well as providing psychosocial benefits, the Snappie also comes with a standing frame option which has physical benefits for Eilidh too, for example, increasing bone density.  The SnapDragon far outclasses anything that the NHS can provide at this time.

test driving!

But this innovative chair comes at a price

£19, 908

and we need to raise that money.

Currently Eilidh is on a waiting list...

if we raise this money before the end of November she will hold her place on the list and her Snappie may well be ready by February...

if we don't raise it by then, she will wait until the money is raised and Snappie will come approximately 8-12 weeks after...

And after the chair... well, there will be more powered chairs and powered trikes and devices and gadgets to give her the best life possible...

But, first things first, let's start with the most important, the life-changing Snappie...

So please, help us fund raise for Eilidh.



forward and back, forward and back



Panthera Time

News Flash!

The Panthera has arrived in the UK
and we may get it as early as Tuesday...

We are so, so, so very excited!

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...

Applications away...

Our applications are in the post...

One to the Joseph Patrick Foundation allied to the Muscular Dystrophy Campaign

and one to Ceridian and the PayBack Foundation.

Here's hoping...

Fingers and toes crossed...

It may be a while 'til we hear though:

Will keep you posted...

Frustrating..

I seem to have been going round in circles with trying to organise accounts and holding accounts for Eilidh but it's now getting sorted... PayPal here we come!  It's the only way that we can collect money for Eilidh online.  We WILL be up and running soon.

I feel as if I'm really not doing enough for Eilidh at the moment.

We are waiting for her Panthera...

We are waiting to set up an account to collect monies...

We are waiting to start fundraising...

I am waiting to go live with this blog...

Waiting...

Waiting...

Waiting...

But I am loving her and giving her a good loving home...

all be it that I've realised my family is as mad as a box of frogs...

or as mad as cheese (stinking bishop or edam? the jury is out!)

or as daft as brushes...

Niamh categorically stated this morning that we are as mad as a box of frogs...

Why? "cause they (the frogs) are jumpy and grumpy"!

So there you have it: out of the mouths of babes, we are as mad as a box of frogs...

Plans...

It's still early days but we hope to be able to link up with the Joseph Patrick Trust to enable charitable giving and donations to be through JustGiving therefore being eligible for Gift Aid.  We may also allow donations through PayPal directly from this website but I'm not sure as to how I feel about doing this or how others will feel about the process... please let me know if you have any strong opinions.

We are in the process of opening an account in EIlidh's name to hold monies raised and are looking into the legal implications of doing so, protecting us from any potential problems in the future.

And finally, I have plans afoot for a charity event - watch this space!

Fund Raising Ideas

Please feel free to suggest some ideas for fund raising - from the sublime to the ridiculous...

Running
Swimming
Climbing
Cycling
Dancing
Baking
Eating
Shaving
Dyeing

And if you would like to fund raise for Eilidh then great, super, fantastic...

Please contact me and let me know... every penny will be much appreciated and we would be so very grateful for your efforts.

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 Lion Cub

A lovely lady came today from Albion Mobility with the Zippie Simba.

Immediately I was struck by the size of the chair, although momentarily distracted by the lovely colourful jungle animals on the spoke guard... a giraffe, a zebra, a monkey, a hippo... but I digress!  The Simba is much taller, bulkier and not so toddler sized compared with the Panthera.  Eilidh sat higher off the ground and didn't look quite as comfortable but was still able to move the chair which was great as it is approximately 4kg heavier than the Panthera Micra.  She was able to put the brakes on and off and on and off again... and Bella-Bear had another free ride too.

Another youth chair was also suggested.  Allowing for growth in width and seat depth, the TiLite YG is another lightweight contender.

So today was certainly another positive experience.  I talked with the Albion rep about mobility and independence in such young children in the UK and she again confirmed that Eilidh would be offered a buggy but that I could push for a manual wheelchair if I thought that it was in her best interest.  She confirmed that the Panthera Micra would not be available through the NHS.  We talked about funding and wheelchair services in the NHS and how there appears to be a huge discrepancy between who should probably get a chair and who actually does.  I am now beginning to understand that wheelchair services should, ideally,  be removed from under NHS remit and given an overhaul - in time, perhaps, in time.