Ally Cadence Trust for Spinal Muscular Atrophy
0800 23 43 762
0333 44 43 762
" Supporting families affected
  by SMA Type 1 "
" Supporting families affected
  by SMA Type 1 "
0800 23 43 762
0333 44 43 762
0800 23 43 762
0333 44 43 762
" Supporting families affected by SMA Type 1 "


ACT for SMA Butterfly Logo

The past few weeks have been challenging. We have had 3 new families over the Summer holidays (plus our usual visits) and lots of fundraising events.

We learned last week that our Children In Need Application was rejected. This, of course, was a huge disappointment to us as it was to be used to purchase another 6 full sets of equipment.

Yesterday was a very difficult day, in which I found myself questioning everything we are doing, and how we can possibly continue if the support doesn’t pick up.

Then I came to this decision.. we haven’t given it our all over the past 7 years to give up now! We haven’t worked 14 hours days to just quit. We have relied heavily on family and friends to look after our children at the drop of a hat, we have relied on our children being understanding enough to realise the importance of what we do and that sometimes a family day may get cancelled as a result.

Our charity work is completely unpaid and as well as the children we have our own business to run. We don't ever complain about the long hours but to give you an idea… last Tuesday Karl worked until 4am, we got a call later that day for an evening visit to a family 3 hours away. By time we collected all the equipment, completed all the paperwork, dropped our children off with family, travelled and spent a couple of hours with the family we got back to our hotel at 12.30am the following morning. We then have to leave early to be back home for a conference call at 10.30am

This is the first hotel we have booked all year! We usually share the driving, even if it means a 14 hour day, so we can save on charity funds. Obviously there are times, like last week, where we have to put our health and safety first and stop over. With each new family comes a considerable amount of cost for equipment. Here’s a breakdown;

£ 75 - Funds a sensory toy pack and bubble tube

£100 - Funds an apnea monitor which alerts parents/carers if the child stops breathing

£300 - Funds a selection of sensory toys, including fibre optic lights and light shows OR an Underwater or DSLR camera to loan to families to record every precious moment

£500 - Funds a specialist car seat with pushchair for loan to families. This enables the child to sit at the correct angle, safely, in the car

£700 - Funds a Pulse Oxymeter

This is without the costs that come with travelling. We are not ashamed to admit that right now we are struggling and we need your help.

We have set up a crowdfunding page for the total amount we requested from Children in need in the hope that we can at least part fund some of this equipment. If you are unable to donate please consider sharing this post to Facebook/Twitter. Awareness means as much as the fundraising itself.

Crowdfunding page for essential equipment

Thank you to all those that continue to support us, we are not going anywhere just yet!

Emma Xx 

Tags: DonationsHelpDonateEquipmentCrowdfunding
Author: Emma Humphries
20 August 2016
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