Running for Xander's Wheelchair & Hoist

This year I am running every day (365 runs, each outdoors and more than one mile) to raise funds for my friend’s son Xander.     My friend is Vicky Wason and her beautiful boy is almost 5 years old.   Xander has a rare brain malformation, called Lissencephaly.

 

She explains Lissencephaly like this;

 

In short, Xander’s brain is entirely smooth vs our wrinkled, cauliflower-looking brain structures.

 

It affects everything about his development and there’s no ‘cure’. Honestly, it’s rather depressing to Google and to read the list of things that he can’t do, his profound disability, short life expectancy, blindness and daily, uncontrolled epileptic seizures.

 

Instead, I like to think about the things that he can do, including; giving amazing hugs, being an excellent adventure buddy, experiencing nature in a wonderfully different, sensorial way (from laughing at birdsong, to delightedly babbling at dappled sunlight, through the trees) and bringing joy to everyone he meets. He’s a charming little chap.

 

I’m incredibly lucky to be his mum, I relish the single-parent and disability labels and I wouldn’t change him for the world. Well, I’d improve his poor epilepsy control but it’s part of his bittersweet existence.

 

Find his adventures on Instagram @xander_and_lissencephaly

 

The trouble is that, as he’s grown, Vicky can no longer carry her nature-lover up hills, over grass, through forests or on a beach.   His incredibly heavy, steel, cumbersome wheelchair gives him whiplash from an uneven street curb, let alone tree roots.

 

I have been so inspired and humbled by Vicky and Xander that I would like my running to raise funds to buy them a much needed, all terrain, lightweight wheelchair buggy, to open up their world; https://www.delichon.uk/delta

 

The buggy has been spec’d and it costs £3,123. It would last them for years and transform their lives.

 

In addition, they would love a mobile hoist to lift Xander into his specialist car seat.

Vicky’s back hurts from lifting him in, to get him to school, each day, and he’s getting heavier.
The hoist costs £3035.
https://www.activemobility.co.uk/smart-transfer-t-mpl-3063

If we happen to go over the fundraising target, any extra will go towards;

GoFundMe Fees, to date (March '22) @ £248.94 (i.e. 2.9% + 2.5)
Communication computer- Eyegaze Tobii TD Pilot @ £6,990.00 (www.uk.tobiidynavox.com/products/td-pilot)
Eyetracker stand @ £790.00 (www.inclusive.co.uk/rehadapt-floor-stand-p4548_
Eyetracker wheelchair mount @ £98.99 (Amazon) 
Physio equipment- Tumble forms & strap @ £368.00 (www.performancehealth.co.uk/timble-forms-2-wedges-pediatrics)
Physio equipment Soft foam plinth (fits X's bubble tube & encourages sitting) @ £249.00 (www.spacekraft.co.uk/bubble-tube-plinth-plinths.html)
Physio equipment- Special needs activity arch @ £70.80 (www.specialneedstoys.com/uk/motor/folding-activity-arch-motor-skill-toy.html)
2nd hand Ppod chair, for supported sitting/ relaxing @ £300.00 (N.b. £577 new but  often 2nd hand on ebay; https://www.healthandcare.co.uk/p-pod-positioning-support-chairs/p-pod-positioning-support-chair-with-crushed-velour-fabric.html)
Physio mat @ £94.99 (Toddlekind Prettier Puzzle Playmats - Nordic | Scandiborn)
Child travel tray- for wheelchair play @ £23.99 (Amazon) 

Total equipment (including wheelchair & hoist) @ £15,421
 
 

So if I do the running can I count you in?    If so, then please donate here…..and THANKYOU!